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Bariatric Surgery Leads to 3-Year Resolution of Diabetes in 24% to 38% of Patients
Study Overview
Objective. To examine the 3-year efficacy of bariatric surgery on resolution of diabetes.
Design. Randomized controlled trial.
Setting and participants. Patients were participants in the STAMPEDE trial, a single-center study with enrollment from March 2007 to January 2011. 150 patients aged 20 to 60 years with a hemoglobin A1cof > 7% and a BMI of 27 to 43 kg/m2 were studied. Patients were excluded for a history of bariatric surgery or complex abdominal surgery and poorly controlled medical or psychiatric conditions [1]. Patients were randomized to intensive medical therapy, Roux-en-Y gastric bypass, or sleeve gastrectomy. All participants received intensive medical therapy, including lifestyle education, diabetes medical management, and cardiovascular risk reduction administered by a diabetes specialist every 3 months for 2 years and every 6 months thereafter. All surgeries were performed by a single surgeon, using equipment by Ethicon (a sponsor of the study, along with the National Institutes of Health, LifeScan, and the Cleveland Clinic).
Main outcome measure. HbA1c of ≤ 6% at 3 years.
Main results. At baseline, 68% were women and 74% were white. Participants had a mean age of 48 years (SD 8), mean A1c of 9.3% (1.5%), and mean BMI of 36 (3.5). 43% required insulin at baseline. Follow-up at 3 years was 91% (9 participants dropped out after enrollment, 4 lost to follow-up), and at this time, A1c levels were ≤ 6% for 5% of intensive medical therapy participants, 38% who had gastric bypass (P < 0.001 compared with medical therapy), and 24% who had sleeve gastrectomy (P = 0.01 compared with medical therapy); the difference between bypass and sleeve gastrectomy arms was not significant (P = 0.17). Nearly all of the participants reaching the primary outcome in the bariatric surgery arms achieved this goal A1c without using diabetic medications (35% and 20%). For the secondary outcome of A1c ≤ 7% without using diabetic medications, 0%, 58%, and 33% reached this endpoint in the medical therapy, bypass, and sleeve gastrectomy arms, respectively (P < 0.001 for both surgery arms compared to medical therapy; P = 0.01 comparing gastric bypass to sleeve gastrectomy). At 3 years, 2%, 69%, and 43% of participants were not taking any diabetic medications; 55% of medical therapy participants were taking insulin compared with 6% and 8% in the surgery arms. Weight loss was significantly greater in the gastric bypass and sleeve gastrectomy arms (24.5% and 21.1% of baseline body weight compared with the medical therapy arm with 4.2%). HDL cholesterol was higher and triglycerides were lower in both surgery arms, compared with medical therapy, but LDL cholesterol and blood pressure were not significantly different. Surgery participants also were taking fewer cardiovascular medications at 3 years. Quality of life was improved in 5 of 8 domains for the bypass arm compared with medical therapy and in 3 of 8 domains for the sleeve gastrectomy arm.
Conclusion. Gastric bypass and sleeve gastrectomy surgery leads to substantial resolution of diabetes compared to medical therapy.
Commentary
Over the last several decades, bariatric surgery has emerged as important treatment for obesity. Observational studies have demonstrated sustained weight loss persisting up to 15 years, as well as reductions in cardiovascular risk, diabetes, and even mortality [2–5]. In the Swedish Obesity Study, a nonrandomized study of 2010 participants undergoing bariatric surgery and 2037 matched controls, gastric bypass led to a 32% reduction from baseline body weight at 1–2 years after surgery with sustained weight loss of 27% at 15 years [2,3]. Patients undergoing gastric banding lost a bit less weight, with 20% weight loss at 1–2 years and 13% at 15 years. Control subjects lost very little.
Among diabetic Swedish Obesity Study participants, bariatric surgery led to a much higher rate of remission from diabetes over 10 years compared with control patients (36% after surgery, 13% among controls) [2] and lower rates of microvascular and macrovascular complications [6]. Among participants who were not diabetic at baseline, the incidence of diabetes was just 7% in the surgery arm and 24% in the control arm [2]; this difference in incidence persisted for 15 years of follow-up [4].
Among randomized controlled trials, several studies have found short-term resolution of diabetes after surgery. A study of 60 patients (age 30 to 60 years, BMI ≥ 35, A1c ≥ 7%) found that 75% of patients undergoing gastric bypass and 95% of patients undergoing biliopancreatic diversion had fasting glucose of < 100 mg/dL and A1c < 6.5% at 2 years; none of the control subjects met these thresholds for diabetes resolution [7]. Another 1-year trial of 120 US and Taiwanese patients (age 30 to 67 years, BMI 30 to 39.9, A1c ≥ 8%) found that 48% randomized to gastric bypass met a combination endpoint of A1c < 7%, LDL cholesterol < 100 mg/dL, and systolic blood pressure of < 130 mm Hg after 1 year compared with 19% assigned to intensive medical therapy [8]. In the gastric bypass arm, 75% reached an A1c of < 7% compared with 32% receiving medical therapy.
What does the study by Schauer and colleagues contribute? First, the study extended data on diabetes resolution to 3 years, longer than prior studies, and found substantial diabetes resolution in more than 1/3 of gastric bypass patients and 1/4 of sleeve gastrectomy patients (5% receiving medical therapy); over 2/3 and 1/3, respectively, were no longer taking any diabetes medications compared with 2% receiving medical therapy. In an earlier published study reporting on 1-year outcomes of this study, Schauer found diabetes resolution in 42% of those undergoing gastric bypass, 37% with sleeve gastrectomy, and 12% with medical therapy, demonstrating some regression over time [1]. Second, the study compared patients undergoing gastric bypass and sleeve gastrectomy. Sleeve gastrectomy is a newer procedure with less long-term outcome data; for example, none of the Swedish Obesity Study participants had sleeve gastrectomy. Schauer et al demonstrated that both procedures provide similar results for the primary outcome, but use of glucose-lowering medications was less and weight loss was more in the gastric bypass arm. These results provide some evidence that bypass surgery might be superior. Third, the study provided important data on cardiovascular risk factors, showing improvement in triglycerides and HDL cholesterol and quality of life. Quality of life was better after surgery than with medical therapy.
In this study, only 4 patients required reoperations, and no deaths or life-threatening complications were reported. However, mortality and morbidity remain a concern in bariatric surgery. In the earlier published study of this trial, authors noted that 22% of gastric bypass required hospitalization in the year after surgery compared with 8% in the sleeve gastrectomy and 9% in the medical therapy arms [1]. Observational data has shown higher rates of complications. In a study of patients at 10 clinical sites across the US from 2005 to 2007, 30-day mortality was 2.1% for open Roux-en Y gastric bypass and 0.2% for laparoscopic bypass [9]. That study also found substantial morbidity, with nearly 8% of patients after open bypass surgery reaching a composite end-point of death, deep venous thromboembolism, a repeat operation, or persistent hospitalization for 30 days after surgery; 4.8% reached this composite outcome after laparoscopic bypass. In another study of Medicare patients, 30-day mortality was 4.8% after open gastric bypass surgery compared with 1.7% for younger patients [10].
This trial by Schauer and colleagues demonstrates important benefits of gastric bypass and sleeve gastrectomy. While bariatric surgery still has some risk, it increasingly appears to be a viable treatment for patients with obesity, especially if they also have diabetes. Ideal future studies would be large enough to provide more data on predictors of diabetes resolution and long-term successful weight loss. Such information would allow clinicians and patients to better predict how patients might respond to surgery over the long term.
Applications for Clinical Practice
Bariatric surgery leads to a substantial reduction in diabetes over 3 years. While reduction was similar after gastric bypass and sleeve gastrectomy, secondary endpoints demonstrate some superiority of gastric bypass surgery. Clinicians should feel increasingly confident recommending bariatric surgery for their patients with diabetes and obesity.
—Jason P. Block, MD, MPH
1. Schauer PR, Kashyap SR, Wolski K, et al. Bariatric surgery versus intensive medical therapy in obese patients with diabetes. N Engl J Med 2012;366:1567–76.
2. Sjostrom L, Lindroos AK, Peltonen M, et al. Lifestyle, diabetes, and cardiovascular risk factors 10 years after bariatric surgery. N Engl J Med 2004;351:2683–93.
3. Sjostrom L, Narbro K, Sjostrom CD, et al. Effects of bariatric surgery on mortality in Swedish obese subjects. N Engl J Med 2007;357:741–52.
4. Carlsson LM, Peltonen M, Ahlin S, et al. Bariatric surgery and prevention of type 2 diabetes in Swedish obese subjects. N Engl J Med 2012;367:695–704.
5. Adams TD, Gress RE, Smith SC, et al. Long-term mortality after gastric bypass surgery. N Engl J Med 2007;357:753–61.
6. Sjostrom L, Peltonen M, Jacobson P, et al. Association of bariatric surgery with long-term remission of type 2 diabetes and with microvascular and macrovascular complications. JAMA 2014;311:2297–304.
7. Mingrone G, Panunzi S, DeGaetano A, et al. Bariatric surgery versus conventional medical therapy for type 2 diabetes. N Engl J Med 2012;366:1577–85.
8. Ikramuddin S, Korner J, Lee WJ, et al. Roux-en-Y gastric bypass vs intensive medical management for the control of type 2 diabetes, hypertension, and hyperlipidemia: the Diabetes Surgery Study randomized clinical trial. JAMA 2013;309:2240–9.
9. The Longitudinal Assessment of Bariatric Surgery (LABS) Consortium. Perioperative safety in the longitudinal assessment of bariatric surgery. N Engl J Med 2009;361:445–54.
10. Flum DR, Salem L, Elrod JA, et al. Early mortality among Medicare beneficiaries undergoing bariatric surgical procedures. JAMA 2005;294:1903–8.
Study Overview
Objective. To examine the 3-year efficacy of bariatric surgery on resolution of diabetes.
Design. Randomized controlled trial.
Setting and participants. Patients were participants in the STAMPEDE trial, a single-center study with enrollment from March 2007 to January 2011. 150 patients aged 20 to 60 years with a hemoglobin A1cof > 7% and a BMI of 27 to 43 kg/m2 were studied. Patients were excluded for a history of bariatric surgery or complex abdominal surgery and poorly controlled medical or psychiatric conditions [1]. Patients were randomized to intensive medical therapy, Roux-en-Y gastric bypass, or sleeve gastrectomy. All participants received intensive medical therapy, including lifestyle education, diabetes medical management, and cardiovascular risk reduction administered by a diabetes specialist every 3 months for 2 years and every 6 months thereafter. All surgeries were performed by a single surgeon, using equipment by Ethicon (a sponsor of the study, along with the National Institutes of Health, LifeScan, and the Cleveland Clinic).
Main outcome measure. HbA1c of ≤ 6% at 3 years.
Main results. At baseline, 68% were women and 74% were white. Participants had a mean age of 48 years (SD 8), mean A1c of 9.3% (1.5%), and mean BMI of 36 (3.5). 43% required insulin at baseline. Follow-up at 3 years was 91% (9 participants dropped out after enrollment, 4 lost to follow-up), and at this time, A1c levels were ≤ 6% for 5% of intensive medical therapy participants, 38% who had gastric bypass (P < 0.001 compared with medical therapy), and 24% who had sleeve gastrectomy (P = 0.01 compared with medical therapy); the difference between bypass and sleeve gastrectomy arms was not significant (P = 0.17). Nearly all of the participants reaching the primary outcome in the bariatric surgery arms achieved this goal A1c without using diabetic medications (35% and 20%). For the secondary outcome of A1c ≤ 7% without using diabetic medications, 0%, 58%, and 33% reached this endpoint in the medical therapy, bypass, and sleeve gastrectomy arms, respectively (P < 0.001 for both surgery arms compared to medical therapy; P = 0.01 comparing gastric bypass to sleeve gastrectomy). At 3 years, 2%, 69%, and 43% of participants were not taking any diabetic medications; 55% of medical therapy participants were taking insulin compared with 6% and 8% in the surgery arms. Weight loss was significantly greater in the gastric bypass and sleeve gastrectomy arms (24.5% and 21.1% of baseline body weight compared with the medical therapy arm with 4.2%). HDL cholesterol was higher and triglycerides were lower in both surgery arms, compared with medical therapy, but LDL cholesterol and blood pressure were not significantly different. Surgery participants also were taking fewer cardiovascular medications at 3 years. Quality of life was improved in 5 of 8 domains for the bypass arm compared with medical therapy and in 3 of 8 domains for the sleeve gastrectomy arm.
Conclusion. Gastric bypass and sleeve gastrectomy surgery leads to substantial resolution of diabetes compared to medical therapy.
Commentary
Over the last several decades, bariatric surgery has emerged as important treatment for obesity. Observational studies have demonstrated sustained weight loss persisting up to 15 years, as well as reductions in cardiovascular risk, diabetes, and even mortality [2–5]. In the Swedish Obesity Study, a nonrandomized study of 2010 participants undergoing bariatric surgery and 2037 matched controls, gastric bypass led to a 32% reduction from baseline body weight at 1–2 years after surgery with sustained weight loss of 27% at 15 years [2,3]. Patients undergoing gastric banding lost a bit less weight, with 20% weight loss at 1–2 years and 13% at 15 years. Control subjects lost very little.
Among diabetic Swedish Obesity Study participants, bariatric surgery led to a much higher rate of remission from diabetes over 10 years compared with control patients (36% after surgery, 13% among controls) [2] and lower rates of microvascular and macrovascular complications [6]. Among participants who were not diabetic at baseline, the incidence of diabetes was just 7% in the surgery arm and 24% in the control arm [2]; this difference in incidence persisted for 15 years of follow-up [4].
Among randomized controlled trials, several studies have found short-term resolution of diabetes after surgery. A study of 60 patients (age 30 to 60 years, BMI ≥ 35, A1c ≥ 7%) found that 75% of patients undergoing gastric bypass and 95% of patients undergoing biliopancreatic diversion had fasting glucose of < 100 mg/dL and A1c < 6.5% at 2 years; none of the control subjects met these thresholds for diabetes resolution [7]. Another 1-year trial of 120 US and Taiwanese patients (age 30 to 67 years, BMI 30 to 39.9, A1c ≥ 8%) found that 48% randomized to gastric bypass met a combination endpoint of A1c < 7%, LDL cholesterol < 100 mg/dL, and systolic blood pressure of < 130 mm Hg after 1 year compared with 19% assigned to intensive medical therapy [8]. In the gastric bypass arm, 75% reached an A1c of < 7% compared with 32% receiving medical therapy.
What does the study by Schauer and colleagues contribute? First, the study extended data on diabetes resolution to 3 years, longer than prior studies, and found substantial diabetes resolution in more than 1/3 of gastric bypass patients and 1/4 of sleeve gastrectomy patients (5% receiving medical therapy); over 2/3 and 1/3, respectively, were no longer taking any diabetes medications compared with 2% receiving medical therapy. In an earlier published study reporting on 1-year outcomes of this study, Schauer found diabetes resolution in 42% of those undergoing gastric bypass, 37% with sleeve gastrectomy, and 12% with medical therapy, demonstrating some regression over time [1]. Second, the study compared patients undergoing gastric bypass and sleeve gastrectomy. Sleeve gastrectomy is a newer procedure with less long-term outcome data; for example, none of the Swedish Obesity Study participants had sleeve gastrectomy. Schauer et al demonstrated that both procedures provide similar results for the primary outcome, but use of glucose-lowering medications was less and weight loss was more in the gastric bypass arm. These results provide some evidence that bypass surgery might be superior. Third, the study provided important data on cardiovascular risk factors, showing improvement in triglycerides and HDL cholesterol and quality of life. Quality of life was better after surgery than with medical therapy.
In this study, only 4 patients required reoperations, and no deaths or life-threatening complications were reported. However, mortality and morbidity remain a concern in bariatric surgery. In the earlier published study of this trial, authors noted that 22% of gastric bypass required hospitalization in the year after surgery compared with 8% in the sleeve gastrectomy and 9% in the medical therapy arms [1]. Observational data has shown higher rates of complications. In a study of patients at 10 clinical sites across the US from 2005 to 2007, 30-day mortality was 2.1% for open Roux-en Y gastric bypass and 0.2% for laparoscopic bypass [9]. That study also found substantial morbidity, with nearly 8% of patients after open bypass surgery reaching a composite end-point of death, deep venous thromboembolism, a repeat operation, or persistent hospitalization for 30 days after surgery; 4.8% reached this composite outcome after laparoscopic bypass. In another study of Medicare patients, 30-day mortality was 4.8% after open gastric bypass surgery compared with 1.7% for younger patients [10].
This trial by Schauer and colleagues demonstrates important benefits of gastric bypass and sleeve gastrectomy. While bariatric surgery still has some risk, it increasingly appears to be a viable treatment for patients with obesity, especially if they also have diabetes. Ideal future studies would be large enough to provide more data on predictors of diabetes resolution and long-term successful weight loss. Such information would allow clinicians and patients to better predict how patients might respond to surgery over the long term.
Applications for Clinical Practice
Bariatric surgery leads to a substantial reduction in diabetes over 3 years. While reduction was similar after gastric bypass and sleeve gastrectomy, secondary endpoints demonstrate some superiority of gastric bypass surgery. Clinicians should feel increasingly confident recommending bariatric surgery for their patients with diabetes and obesity.
—Jason P. Block, MD, MPH
Study Overview
Objective. To examine the 3-year efficacy of bariatric surgery on resolution of diabetes.
Design. Randomized controlled trial.
Setting and participants. Patients were participants in the STAMPEDE trial, a single-center study with enrollment from March 2007 to January 2011. 150 patients aged 20 to 60 years with a hemoglobin A1cof > 7% and a BMI of 27 to 43 kg/m2 were studied. Patients were excluded for a history of bariatric surgery or complex abdominal surgery and poorly controlled medical or psychiatric conditions [1]. Patients were randomized to intensive medical therapy, Roux-en-Y gastric bypass, or sleeve gastrectomy. All participants received intensive medical therapy, including lifestyle education, diabetes medical management, and cardiovascular risk reduction administered by a diabetes specialist every 3 months for 2 years and every 6 months thereafter. All surgeries were performed by a single surgeon, using equipment by Ethicon (a sponsor of the study, along with the National Institutes of Health, LifeScan, and the Cleveland Clinic).
Main outcome measure. HbA1c of ≤ 6% at 3 years.
Main results. At baseline, 68% were women and 74% were white. Participants had a mean age of 48 years (SD 8), mean A1c of 9.3% (1.5%), and mean BMI of 36 (3.5). 43% required insulin at baseline. Follow-up at 3 years was 91% (9 participants dropped out after enrollment, 4 lost to follow-up), and at this time, A1c levels were ≤ 6% for 5% of intensive medical therapy participants, 38% who had gastric bypass (P < 0.001 compared with medical therapy), and 24% who had sleeve gastrectomy (P = 0.01 compared with medical therapy); the difference between bypass and sleeve gastrectomy arms was not significant (P = 0.17). Nearly all of the participants reaching the primary outcome in the bariatric surgery arms achieved this goal A1c without using diabetic medications (35% and 20%). For the secondary outcome of A1c ≤ 7% without using diabetic medications, 0%, 58%, and 33% reached this endpoint in the medical therapy, bypass, and sleeve gastrectomy arms, respectively (P < 0.001 for both surgery arms compared to medical therapy; P = 0.01 comparing gastric bypass to sleeve gastrectomy). At 3 years, 2%, 69%, and 43% of participants were not taking any diabetic medications; 55% of medical therapy participants were taking insulin compared with 6% and 8% in the surgery arms. Weight loss was significantly greater in the gastric bypass and sleeve gastrectomy arms (24.5% and 21.1% of baseline body weight compared with the medical therapy arm with 4.2%). HDL cholesterol was higher and triglycerides were lower in both surgery arms, compared with medical therapy, but LDL cholesterol and blood pressure were not significantly different. Surgery participants also were taking fewer cardiovascular medications at 3 years. Quality of life was improved in 5 of 8 domains for the bypass arm compared with medical therapy and in 3 of 8 domains for the sleeve gastrectomy arm.
Conclusion. Gastric bypass and sleeve gastrectomy surgery leads to substantial resolution of diabetes compared to medical therapy.
Commentary
Over the last several decades, bariatric surgery has emerged as important treatment for obesity. Observational studies have demonstrated sustained weight loss persisting up to 15 years, as well as reductions in cardiovascular risk, diabetes, and even mortality [2–5]. In the Swedish Obesity Study, a nonrandomized study of 2010 participants undergoing bariatric surgery and 2037 matched controls, gastric bypass led to a 32% reduction from baseline body weight at 1–2 years after surgery with sustained weight loss of 27% at 15 years [2,3]. Patients undergoing gastric banding lost a bit less weight, with 20% weight loss at 1–2 years and 13% at 15 years. Control subjects lost very little.
Among diabetic Swedish Obesity Study participants, bariatric surgery led to a much higher rate of remission from diabetes over 10 years compared with control patients (36% after surgery, 13% among controls) [2] and lower rates of microvascular and macrovascular complications [6]. Among participants who were not diabetic at baseline, the incidence of diabetes was just 7% in the surgery arm and 24% in the control arm [2]; this difference in incidence persisted for 15 years of follow-up [4].
Among randomized controlled trials, several studies have found short-term resolution of diabetes after surgery. A study of 60 patients (age 30 to 60 years, BMI ≥ 35, A1c ≥ 7%) found that 75% of patients undergoing gastric bypass and 95% of patients undergoing biliopancreatic diversion had fasting glucose of < 100 mg/dL and A1c < 6.5% at 2 years; none of the control subjects met these thresholds for diabetes resolution [7]. Another 1-year trial of 120 US and Taiwanese patients (age 30 to 67 years, BMI 30 to 39.9, A1c ≥ 8%) found that 48% randomized to gastric bypass met a combination endpoint of A1c < 7%, LDL cholesterol < 100 mg/dL, and systolic blood pressure of < 130 mm Hg after 1 year compared with 19% assigned to intensive medical therapy [8]. In the gastric bypass arm, 75% reached an A1c of < 7% compared with 32% receiving medical therapy.
What does the study by Schauer and colleagues contribute? First, the study extended data on diabetes resolution to 3 years, longer than prior studies, and found substantial diabetes resolution in more than 1/3 of gastric bypass patients and 1/4 of sleeve gastrectomy patients (5% receiving medical therapy); over 2/3 and 1/3, respectively, were no longer taking any diabetes medications compared with 2% receiving medical therapy. In an earlier published study reporting on 1-year outcomes of this study, Schauer found diabetes resolution in 42% of those undergoing gastric bypass, 37% with sleeve gastrectomy, and 12% with medical therapy, demonstrating some regression over time [1]. Second, the study compared patients undergoing gastric bypass and sleeve gastrectomy. Sleeve gastrectomy is a newer procedure with less long-term outcome data; for example, none of the Swedish Obesity Study participants had sleeve gastrectomy. Schauer et al demonstrated that both procedures provide similar results for the primary outcome, but use of glucose-lowering medications was less and weight loss was more in the gastric bypass arm. These results provide some evidence that bypass surgery might be superior. Third, the study provided important data on cardiovascular risk factors, showing improvement in triglycerides and HDL cholesterol and quality of life. Quality of life was better after surgery than with medical therapy.
In this study, only 4 patients required reoperations, and no deaths or life-threatening complications were reported. However, mortality and morbidity remain a concern in bariatric surgery. In the earlier published study of this trial, authors noted that 22% of gastric bypass required hospitalization in the year after surgery compared with 8% in the sleeve gastrectomy and 9% in the medical therapy arms [1]. Observational data has shown higher rates of complications. In a study of patients at 10 clinical sites across the US from 2005 to 2007, 30-day mortality was 2.1% for open Roux-en Y gastric bypass and 0.2% for laparoscopic bypass [9]. That study also found substantial morbidity, with nearly 8% of patients after open bypass surgery reaching a composite end-point of death, deep venous thromboembolism, a repeat operation, or persistent hospitalization for 30 days after surgery; 4.8% reached this composite outcome after laparoscopic bypass. In another study of Medicare patients, 30-day mortality was 4.8% after open gastric bypass surgery compared with 1.7% for younger patients [10].
This trial by Schauer and colleagues demonstrates important benefits of gastric bypass and sleeve gastrectomy. While bariatric surgery still has some risk, it increasingly appears to be a viable treatment for patients with obesity, especially if they also have diabetes. Ideal future studies would be large enough to provide more data on predictors of diabetes resolution and long-term successful weight loss. Such information would allow clinicians and patients to better predict how patients might respond to surgery over the long term.
Applications for Clinical Practice
Bariatric surgery leads to a substantial reduction in diabetes over 3 years. While reduction was similar after gastric bypass and sleeve gastrectomy, secondary endpoints demonstrate some superiority of gastric bypass surgery. Clinicians should feel increasingly confident recommending bariatric surgery for their patients with diabetes and obesity.
—Jason P. Block, MD, MPH
1. Schauer PR, Kashyap SR, Wolski K, et al. Bariatric surgery versus intensive medical therapy in obese patients with diabetes. N Engl J Med 2012;366:1567–76.
2. Sjostrom L, Lindroos AK, Peltonen M, et al. Lifestyle, diabetes, and cardiovascular risk factors 10 years after bariatric surgery. N Engl J Med 2004;351:2683–93.
3. Sjostrom L, Narbro K, Sjostrom CD, et al. Effects of bariatric surgery on mortality in Swedish obese subjects. N Engl J Med 2007;357:741–52.
4. Carlsson LM, Peltonen M, Ahlin S, et al. Bariatric surgery and prevention of type 2 diabetes in Swedish obese subjects. N Engl J Med 2012;367:695–704.
5. Adams TD, Gress RE, Smith SC, et al. Long-term mortality after gastric bypass surgery. N Engl J Med 2007;357:753–61.
6. Sjostrom L, Peltonen M, Jacobson P, et al. Association of bariatric surgery with long-term remission of type 2 diabetes and with microvascular and macrovascular complications. JAMA 2014;311:2297–304.
7. Mingrone G, Panunzi S, DeGaetano A, et al. Bariatric surgery versus conventional medical therapy for type 2 diabetes. N Engl J Med 2012;366:1577–85.
8. Ikramuddin S, Korner J, Lee WJ, et al. Roux-en-Y gastric bypass vs intensive medical management for the control of type 2 diabetes, hypertension, and hyperlipidemia: the Diabetes Surgery Study randomized clinical trial. JAMA 2013;309:2240–9.
9. The Longitudinal Assessment of Bariatric Surgery (LABS) Consortium. Perioperative safety in the longitudinal assessment of bariatric surgery. N Engl J Med 2009;361:445–54.
10. Flum DR, Salem L, Elrod JA, et al. Early mortality among Medicare beneficiaries undergoing bariatric surgical procedures. JAMA 2005;294:1903–8.
1. Schauer PR, Kashyap SR, Wolski K, et al. Bariatric surgery versus intensive medical therapy in obese patients with diabetes. N Engl J Med 2012;366:1567–76.
2. Sjostrom L, Lindroos AK, Peltonen M, et al. Lifestyle, diabetes, and cardiovascular risk factors 10 years after bariatric surgery. N Engl J Med 2004;351:2683–93.
3. Sjostrom L, Narbro K, Sjostrom CD, et al. Effects of bariatric surgery on mortality in Swedish obese subjects. N Engl J Med 2007;357:741–52.
4. Carlsson LM, Peltonen M, Ahlin S, et al. Bariatric surgery and prevention of type 2 diabetes in Swedish obese subjects. N Engl J Med 2012;367:695–704.
5. Adams TD, Gress RE, Smith SC, et al. Long-term mortality after gastric bypass surgery. N Engl J Med 2007;357:753–61.
6. Sjostrom L, Peltonen M, Jacobson P, et al. Association of bariatric surgery with long-term remission of type 2 diabetes and with microvascular and macrovascular complications. JAMA 2014;311:2297–304.
7. Mingrone G, Panunzi S, DeGaetano A, et al. Bariatric surgery versus conventional medical therapy for type 2 diabetes. N Engl J Med 2012;366:1577–85.
8. Ikramuddin S, Korner J, Lee WJ, et al. Roux-en-Y gastric bypass vs intensive medical management for the control of type 2 diabetes, hypertension, and hyperlipidemia: the Diabetes Surgery Study randomized clinical trial. JAMA 2013;309:2240–9.
9. The Longitudinal Assessment of Bariatric Surgery (LABS) Consortium. Perioperative safety in the longitudinal assessment of bariatric surgery. N Engl J Med 2009;361:445–54.
10. Flum DR, Salem L, Elrod JA, et al. Early mortality among Medicare beneficiaries undergoing bariatric surgical procedures. JAMA 2005;294:1903–8.
Experiencing Age-Related Vision and Hearing Impairment: The Psychosocial Dimension
From the University of Education (Dr. Heyl) and Heidelberg University (Dr. Wahl), Heidelberg, Germany.
Abstract
- Objective: To summarize the current state of research regarding the experience of age-related vision and hearing impairment.
- Methods:Review of the literature.
- Results: Negative consequences of age-related vision and hearing impairment manifest in the domains of health and longevity, everyday competence, cognitive functioning, social functioning, and subjective well-being. However, while vision impairment strongly impacts everyday competence, the burden of hearing impairment can mainly be found in the social domain. Psychosocially framed intervention research has shown promising findings, but many studies rely on small samples or do not include a control condition.
- Conclusions: Although more research is needed, it is clear that traditional rehabilitation programs targeting age-related vision and hearing impairments need a strong psychosocial component.
Vision and hearing are essential for person–environment interaction and both are subject to pronounced age-related changes. Ongoing demographic changes and increasing life expectancy is contributing to a significant increase in the number of very old individuals [1]. It is projected that by 2030 about 50% of older Americans may have some significant eye disease, ie, cataract, glaucoma, or age-related macular degeneration [2]. Presbycusis as the major cause of age-related hearing impairment is present in 40% of the American senior citizens [3]. In this narrative review, we review the epidemiological data on age-related vision and hearing impairment, research on its psychosocial impact, and intervention research aimed to improve coping processes and rehabilitative outcomes. We close with future recommendations directed both toward research and clinical practice.
Epidemiology
Vision and hearing impairment is highly prevalent in old age, yet prevalence rates reported in the literature are quite different, depending on the definition of vision and hearing impairment used. A widely used criterion for low vision is the one used by the World Health Organization, ie, visual acuity less than 20/60 and equal to or better than 20/400 in the better eye with best correction. A best corrected visual acuity of less than 20/400 in the better eye is used to define blindness [4]. A disabling hearing impairment is defined by an average hearing loss in decibel (dB HL) of at least 41 dB HL at 500, 1000, 2000, and 4000 Hz. [5]. Translated to everyday life, such hearing impairment mainly manifests in severe difficulties in understanding normal conversation. Besides differing definitions, different methods to assess vision and hearing impairment and heterogenous study populations make comparisons of prevalence rates difficult [6]. In particular, relying solely on self-report data to assess vision and hearing loss seems generally problematic. In addition, the strong focus in vision impairment assessment on visual acuity measures has limitations, as other indicators, such as contrast sensitivity or useful field of vision, may be more important for out-of-home mobility or driving [7].
A recent study on the prevalence of visual impairment (defined as best corrected visual acuity < 20⁄40) in 6 European countries found quite similar prevalence rates as reported for the US: Prevalence of visual impairment was 3% in those aged 65 to 74 years, 13% in those over 75 years and 33% in those over 85 years [8]. At first glance, vision loss seems to be more prevalent among older women than among older men, but this relationship is not sustained in multivariate analyses considering age, health, and social support variables [9].
Regarding hearing loss, Gopinath et al [10] found prevalence rates of 29% among men and 17% among women aged 60 to 69 years. Moreover, for every 10 years of age, the prevalence of hearing loss doubled. In their review of epidemiologic data on prevalence of age-related hearing impairment in Europe, Roth and coauthors [11] report that at the age of 70 years, about 30% of men and 20% of women were found to have a hearing loss of at least 30 dB HL, while at the age of 80 years about 55% of men and 45% of women were affected. Lin et al found that 63% of those 70 years and older had a hearing loss of more than 25 dB in the better ear [12].
According to a recent review by Schneider et al [6], prevalence of impairment in both vision and hearing in older age (dual sensory impairment) varies between 1.6% and 22.5% due to different sample characteristics (eg, size, age) and different definitions and assessments of vision and hearing impairment (see also [13]). However, there is good evidence that dual sensory impairment increases with age, and that it is more common among frailer subpopulations such as older individuals consulting care services [6].
Quality of Life Impact of Vision and Hearing Impairment
Health and Longevity
There is inconsistent evidence that both age-related vision and hearing impairment are accompanied by heightened multimorbidity and an increased mortality rate. For example, while some older as well as more recent studies have found that visual and hearing declines over time predict death in very old age [14–16], other studies have detected no significant relationship after adjusting for confounders such as age, gender, and education [17,18]. Among the hearing impaired, only men seem to have a significant increase in mortality risk [15,19]. Dual sensory impairment appears to be more consistently and more strongly related to increased mortality than vision or hearing impairment alone [19–21].
Everyday Competence
The term everyday competence includes both basic (eg, self-care behaviors) and instrumental (eg, using public transport) activities of daily living (ADL/IADL [22]). Age-related vision impairment has been found to be robustly associated with significantly lower everyday competence, because visual capacity is a critical prerequisite for such behaviors [23,24]. Indeed, lowered everyday competence appeared as the best of a range of variables (including cognitive function and well-being–related measures) used to differentiate between visually impaired and visually unimpaired older adults [18]. Furthermore, vision impairment impacts cross-sectionally as well as longitudinally—more strongly on IADL as compared to ADL—because the execution of IADL is more complex and depends more strongly on environmental enhancing or hindering factors [25–27]. Hence, shrinkage in IADL competence reflects a kind of early behavioral marker of severe vision impairment, whereas significant ADL decrease only happens later in the process of chronic vision loss.
In contrast to vision impairment, age-related hearing loss has been found not to have a major impact in particular on ADL/IADL [28]. However, as has been found elsewhere [29], hearing loss is associated with increased reliance on community and informal supports, suggesting that while IADL function may not deteriorate with hearing loss, the way it is conducted may change (ie, need for support to maintain participation).
It should also be mentioned in this context that assessment strategies have been developed to better consider the specific life conditions of those with vision and hearing impairment. The best-known and frequently applied instruments in this context are the National Eye Institute Visual Function Questionnaire [30] and the Hearing Handicap Inventory for the Elderly [31].
Cognitive Functioning
Previous research largely supports the notion that reduced vision and hearing function is accompanied by a decrease in cognitive performance in older adults. The work of Lindenberger and Baltes, based on the Berlin Aging Study (BASE)—but also including additional studies with a wider age-range—is central in supporting a strong connection among vision, hearing, balance, and cognitive functioning in later life. Lindenberger and Baltes [32] found that general intelligence correlated just as strongly with visual as with auditory ability. In a model conjoining age, sensory function, as well as intelligence, visual and auditory function predicted a large portion of interindividual differences in intelligence and indeed fully mediated the negative correlation between age and intelligence. This finding has meanwhile been replicated by a number of other research groups and may be regarded as rather robust [33,34]. In addition, Baltes and Lindenberger [35] observed that sensory measures were better predictors of intelligence than socio-structural variables such as education or social class. They also showed that the connection among sensory functioning and intelligence was much closer in older adults as compared to adults in early and middle adulthood [34].
No clear difference between the sensory modalities of vision and hearing has been identified regarding their relationship with cognitive performance. On the one hand, there is research supporting the view that both vision and hearing impairment are connected with cognitive decline [12,36,37], while some evidence also supports that the linkage may be stronger with vision [14]. On the other hand, there are also data not supporting a close connection between vision and hearing impairment and cognitive function [38]. Explanations for such inconsistencies may refer to a number of reasons, such as pronounced positive selectivity of samples (which may lead to underestimation of connections among sensory and cognitive function), the application of established cognitive tests not appropriate for sensory impaired older adults (which may lead to overestimation of connections among sensory and cognitive function), and the application of different cut-off scores for significant vision and hearing impairment (possibly, higher cut-offs may lead to higher, lower to lower connections). Longitudinal data using the latest in causal modeling data analysis support the view that the causal dynamics involved in sensory and intelligence change are complex and that each of these variables can drive change in the other across longer periods of later life [39].
Vision status also plays a role when it comes to the connection between cognitive function and everyday competence—a linkage that is generally challenged as people age and that may lead to endpoints such as dependence on others and transition to long-term care. Heyl et al [40] observed that the link between vision status and out-of-home leisure activities is mediated by cognitive status. In a more recent study, able to add to the understanding of such a mediation process, Heyl and Wahl [38,41] showed that the connection between cognitive function and everyday function is much closer in visually and hearing impaired older adults as compared with visually unimpaired older adults, which possibly means that both visually and hearing impaired elders rely more intensely on their cognitive resources. Causality dynamics may however also work in the opposite direction. As Rovner and colleagues [42,43] observed in a study with age-related macular degeneration patients over 64 years of age covering a 3-year observation period and 2 measurement occasions, activity loss over time due to the visual loss led to cognitive decline happening between T1 and T2. This finding fits well with the more general finding in the cognitive aging literature that the exertion of social and leisure activities is important for maintaining cognitive functioning [44].
Social Functioning
Social relations as well as social support have generally been found to be of key importance for older adults [45]. Reinhardt [46] found that visually impaired older adults nominated on average 5.4 persons of intimate relation within their family network, and 3.5 persons within their friendship network, which is similar to sensory-unimpaired older adults, such as those assessed in the BASE [47]. In addition, in Wahl et al’s study [18], visually and hearing impaired older adults nominated practically the same number of persons as being in the most intimate circle of their social network (4.70 versus 4.71); the respective number in a comparison group of visually unimpaired older adults amounted to 5.2 persons, which was not significantly different from both sensory impaired group means.
Neither vision nor hearing impairment seem to affect the experience of loneliness dramatically [18,23,48], although some research did report an increased risk of loneliness in older adults with vision impairment [49]. It is clear however that hearing impairment more strongly than vision impairment negatively impacts social communication and carries a strong stigma for those affected [48,50]. The stigma particularly implies that hearing deficits and concomitant communication disturbances (eg, giving an answer that does not match the question) elicits the view of a cognitively impaired, if not demented older person. In some contrast, vision loss seems to raise rather strong helping impulses and feelings of compassion. The dark side of this tendency is that it seems a challenge to provide visually impaired older adults with the instrumental support needed while at the same time fostering remaining capabilities [51]. Overprotection may put constraints on the visually impaired older adults’ “true” functional capacity and thereby contribute to loss in competence over the longer run due to disuse [52].
Subjective Well Being–related Outcomes and Depression
Visually impaired older adults have shown evidence of diminished well-being as compared with sensory unimpaired older adults [53], although effect sizes were rather small in a respective meta-analysis [54]. Differences in well-being between hearing impaired and unimpaired older adults seem small or nonexistent in some studies [18,55], but considerable in others [56]. The latter study covering a 16-year observational period as well as other longitudinal work (eg, [57]) also support the notion that remaining ADLs and social engagement mediate the linkage between sensory loss and well-being and depression. The “well-being paradox” in old age, pointing to pronounced adaptive resources to maintain well-being in spite of adverse conditions [58], may also apply to sensory impaired older adults [57,59].
At the same time, it is critical to acknowledge that visually impaired older adults represent an at-risk population, in which the positive impact of human adaptation and the drawback of reaching the limits of psychological resilience go hand in hand. Affect balance (ratio of positive and negative affect) has been found to be more toward the negative pole in visually impaired older adults [60] and depression has consistently been found to be significantly increased in visually impaired older adults [61–63]. Rates roughly vary between 15% and 30% and are particularly high in age-related macular degeneration patients [61]. This is also important, because depressive symptoms may accelerate both cognitive decline and decline in everyday competence in age-related macular degeneration patients [42]. Perceived overprotection may also lead to negative consequences in terms of heightened depression and anxiety over time [64].
Regarding the impact of hearing loss on depression, findings are quite inconsistent. Some studies found evidence for a significant relationship between hearing impairment and depressive symptoms among older adults [65, 66], while others did not [67, 68]. Gopinath and co-workers [66] observed that hearing impaired individuals, particularly women, younger than 70 years of age and those who were infrequently using a hearing aid (less than one hour per day) were more likely to suffer from depressive symptoms. According to a population-based study among older Italians, hearing impairment might be more closely related to anxiety symptoms than to depression [69].
Dual Sensory Impairment
Previous research supports the notion that the overall psychosocial situation of those with dual sensory impairment is even worse as compared to those with sole vision or hearing impairment. In particular, higher rates of ADL/IADL impairment, depression and lowered well-being have been found in older adults affected by dual sensory loss [6,13,18,56]. Also, dual sensory impairment has been found to be linked with cognitive decline cross-sectionally [37] as well as longitudinally [36].
Improving Quality of Life in Sensory Impaired Older Adults
The research summary provided in the previous section underscores that the experience of age-related visual and hearing impairment comes with pronounced challenges that deserve evidence-based professional support. In the following, we give an overview and evaluation of major work in the area of psychosocially framed intervention research targeting older adults with vision and hearing loss. By psychosocially framed interventions we mean studies containing programs that focused on psychosocial processes (eg, consultation on how to better cope with sensory impairment, educative components, problem solving strategies, coping with negative affect) and assessed psychosocial outcomes (eg, everyday functioning, depression, emotional stress experiences). Such interventions may have been integrated into regular rehabilitation programs or offered as a separate strategy in addition to classic rehabilitation. We also consider physical activity–related and overall “way of living” interventions such as tai chi and yoga. In doing so, our aim is to highlight the bandwidth of psychosocial interventions and respective outcomes, not comprehensiveness.
Age-related Vision Impairment
Most psychosocially framed interventions could be characterized as self-management– and disease management–like efforts and are promising for visually impaired older adults. Major elements of such programs include stress-reducing strategies (eg, muscle-relaxation exercises), goal-directed problem-solving, strategies to evoke positive affect, activating available resources, and information and consultation. Typically, such programs are conducted in a group format in an eye clinic, bringing together 6 to 8 visually impaired older adults for weekly sessions of 2 to 3 hours over 6 to 8 weeks.
More recent work provides additional support for the usefulness of self-management programs for visually impaired older adults [72,73]. In addition, emerging evidence supports the notion that psychosocially framed interventions may contribute to saving health costs (eg, via reduced psychopharmacy) and may also enhance commitment
It is also obvious that such programs should find a strong liaison with classic high-caliber rehabilitation programs for visually impaired older adults, including effective reading training [75].
Furthermore, physical training programs, which have proven efficiency with old and very old individuals—including those who are cognitively vulnerable—also seem to be of significant advantage for visually impaired older adults. As has been found, such programs not only increase posture, gait, and general physical fitness, they also prevent falls and enhance well-being, self-efficacy, and cognitive function, especially executive control [76]. Postural control has been improved by multimodal balance and strength exercises among older individuals with visual impairments as well [77]. Participation in physical activity and being in better physical condition buffered the relationship between dual sensory impairment and depression, pointing to the importance of physical training programs for the mental health of older persons with dual sensory impairment [78]. According to a randomized control study as well as to some case studies, tai chi seems to be an effective tool to improve balance control in visually impaired older adults, and thus to reduce an important risk factor for falls [79–81]. Visually impaired adults might also benefit from yoga in terms of balance improvement as well as psychosocial improvements [82]. To teach tai chi efficiently, it is necessary to adapt instructions to the needs of the visually impaired seniors by relying on verbal cuing and manual body placement [80]. The need to adapt instructions and to provide an accessible environment (including transportation arrangements) to motivate older individuals with visual impairments to perform regular physical exercises is also highlighted by Surakka and Kivela [83].
Furthermore, there is evidence that state of the art low vision rehabilitation as such also has beneficial effects on psychosocial outcomes, such as general and vision-related quality of life and emotional well-being.
Age-related Hearing Impairment
Interventions concerning older adults with hearing impairment center on amplification and aural rehabilitation, including auditory training [84]. It has been shown that using hearing aids improves the quality of life, in particular hearing-related quality of life, of hearing impaired adults [85]. Yet many older adults who would benefit from hearing aids do not wear them [86]. From the reasons identified in the review by McCormack and Fortnum [86], perceived hearing aid value, in particular poor benefit in noisy situations, fit and comfort, as well as care and maintenance of the hearing aid emerged as most important. Improvements in these areas are necessary to enhance hearing aid usage among older adults with hearing impairment. Meyer and Hickson [87] identified 5 factors increasing the likelihood to seek help for hearing impairment and/or adopt hearing aids: (1) moderate to severe hearing impairment and perceived hearing-related everyday limitations; (2) older age; (3) poor subjective hearing; (4) perceiving more benefits than barriers to amplification; and (5) perceiving significant others as supportive of hearing rehabilitation. Thus, the involvement of family members in the rehabilitation process appears necessary and promising.
Beyond amplification, aural rehabilitation seeks to improve the situation of hearing impaired older adults by providing listening and communication techniques to enhance communication effectiveness. We have summarized major work in this area in Table 2.
In sum, it seems clear for both vision impairment [95] and hearing impairment [96] that classic rehabilitation strategies, such as fitting a reading device or hearing aid, need significant enrichment by psychosocial training components in order to achieve the best outcomes possible. Furthermore, given the findings on the role of cognitive resources in visually impaired older adults (see respective section above), cognitive training may be an important addition to psychosocial intervention and rehabilitation [38,97]. It must be noted, however, that many of the available studies reveal a number of methodological limitations, such as small sample sizes, missing control condition, and no follow-up assessments to estimate the maintenance of effects.
A significant future need is intervention research addressing older adults with dual sensory impairment. Although we found study protocols related to important trials underway [98,99] and a physical training study with visually impaired older adults that included also some dual sensory impaired individuals [83], it seems that there is not much research in terms of completed interventions and respective findings. Furthermore, it may be important to better involve significant others such as family members and friends in psychosocially framed programs and emerging research with low vision adults has revealed advantages and disadvantages of such an approach [100].
Practical Implications
The older patient is on the way to become the “standard” patient for eye care and hearing specialists and thus a challenge for public health at large. Based on the evidence compiled above, we argue that best practice in medical treatment and traditional rehabilitation of vision and hearing impairment should better consider the psychosocial dimension of age-related vision and hearing impairment. We see different levels at which a stronger psychosocially framed input is needed. First, at the diagnostic level, having a better understanding of everyday competence, the role of cognitive functioning, social resources, and well-being–related dynamics in visually impaired and hearing impaired older adults may significantly enrich the professional background knowledge about the patient. Such knowledge may become important for diagnostic evaluation, treatment decisions, and predictions of long-term outcomes. It seems also critical to have an understanding of the more fundamental mechanisms and systemic inter-relations in older patients (eg, among visual, hearing, mobility, and cognitive impairment), because such evidence helps to evaluate overall vulnerability and likely future trajectories of respective patients.
Second, at the intervention level against the background of the available empirical effectiveness evidence, self-management–oriented and psycho-educative programs should become a regular component of low vision rehabilitation. Similarly, psychosocial programs educating older adults in hearing tactics and hearing loss–oriented coping strategies should become a regular part of hearing rehabilitation. In addition, we argue that cognitive training and physical activity–oriented interventions should have their place in rehabilitation programs designed for older visually and hearing impaired adults. The major reason is that respective programs generally have been found to positively impact quality of life in old age. This impact may be particularly valuable for more vulnerable populations, such as sensory impaired older adults. We therefore recommend implementing psychosocially framed programs as a regular service in eye clinics as well as in ear, nose, and throat clinics, because this seems to be the setting best suited to approach visually and hearing impaired older adults as well as to offer the logistic opportunities to conduct such programs. It would also be critical to extend such programs to in-home services as well as services covering long-term care settings. Older adults with dual sensory impairment bring specific challenges to such interventions, such as the optimal cooperation and combination of rehabilitation and psychosocial expertise related to each domain and traditionally offered side by side. It is also good news that new trials are underway to learn more about psychosocial interventions aimed to address older adults with dual sensory loss [98,99].
In conclusion, we argue for a better implementation of both age-related psycho-ophthalmology as well as psycho-audiology. Although we regard psychologists with a clinical training background as a key profession to be involved in psychosocially framed interventions with older adults with vision and hearing impairment, other professions (eg, occupational therapists, sport scientists) should also play an important role. A multiprofessional enrichment of classic sensory rehabilitation based on the training principles as described above is a major future need.
Corresponding author: Vera Heyl, PhD, Zeppelinstr, 1, D-69121, Heidelberg, Germany, [email protected].
Financial disclosures: None.
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84. Li-Korotky H-S. Age-related hearing loss: Quality of care for quality of life. Gerontologist 2012;52:265-71.
85. Chisolm TH, Johnson CE, Danhauer JL, et al. A systematic review of health-related quality of life and hearing aids: Final report of the American Academy of Audiology Task Force on the Health-Related Quality of Life Benefits of Amplification in Adults. J Am Acad Audiol 2007;18:151-83.
86. McCormack A, Fortnum H. Why do people fitted with hearing aids not wear them? Int J Audiol 2013 52:360-8.
87. Meyer C, Hickson L. What factors influence help-seeking for hearing impairment and hearing aid adoption in older adults? Int J Audiol 2012;51:66-74.
88. Andersson G, Green M, Melin L. Behavioural hearing tactics: a controlled trial of a short treatment programme. Behav Res Ther 1997;35:523-30.
89. Andersson G, Melin L, Scott B, et al. Behavioural counselling for subjects with acquired hearing loss. A new approach to hearing tactics. Scandinav Audiol 1994;23:249-56.
90. Burk MH, Humes LE. Effects of long-term training on aided speech-recognition performance in noise in older adults. J Speech Lang Hear Res 2008;51:759-71.
91. Henderson Sabes J, Sweetow RW. Variables predicting outcomes on listening and communication enhancement (LACETM) training. Int J Audiol 2007;46:374-83.
92. Kramer SE, Allessie GH, Dondorp AW, et al. A home education program for older adults with hearing impairment and their significant others: a randomized trial evaluating short- and long-term effects. Int J Audiol 2005;44:255-64.
93. Hickson L, Worrall L, Scarinci N. Measuring outcomes of a communication program for older people with hearing impairment using the International Outcome Inventory. Int J Audiol 2006;45:238-46.
94. Barcroft J, Sommers MS, Tye-Murray N, et al. Tailoring auditory training to patient needs with single and multiple talkers: Transfer-appropriate gains on a four-choice discrimination test. Int J Audiol 2011;50:802-8.
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107. Dahlin-Ivanoff S, Sonn U, Svensson E. A health education program for elderly persons with visual impairments and perceived security in the performance of daily occupations: a randomized study. Am J Occup Thera 2002;56:322-30.
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From the University of Education (Dr. Heyl) and Heidelberg University (Dr. Wahl), Heidelberg, Germany.
Abstract
- Objective: To summarize the current state of research regarding the experience of age-related vision and hearing impairment.
- Methods:Review of the literature.
- Results: Negative consequences of age-related vision and hearing impairment manifest in the domains of health and longevity, everyday competence, cognitive functioning, social functioning, and subjective well-being. However, while vision impairment strongly impacts everyday competence, the burden of hearing impairment can mainly be found in the social domain. Psychosocially framed intervention research has shown promising findings, but many studies rely on small samples or do not include a control condition.
- Conclusions: Although more research is needed, it is clear that traditional rehabilitation programs targeting age-related vision and hearing impairments need a strong psychosocial component.
Vision and hearing are essential for person–environment interaction and both are subject to pronounced age-related changes. Ongoing demographic changes and increasing life expectancy is contributing to a significant increase in the number of very old individuals [1]. It is projected that by 2030 about 50% of older Americans may have some significant eye disease, ie, cataract, glaucoma, or age-related macular degeneration [2]. Presbycusis as the major cause of age-related hearing impairment is present in 40% of the American senior citizens [3]. In this narrative review, we review the epidemiological data on age-related vision and hearing impairment, research on its psychosocial impact, and intervention research aimed to improve coping processes and rehabilitative outcomes. We close with future recommendations directed both toward research and clinical practice.
Epidemiology
Vision and hearing impairment is highly prevalent in old age, yet prevalence rates reported in the literature are quite different, depending on the definition of vision and hearing impairment used. A widely used criterion for low vision is the one used by the World Health Organization, ie, visual acuity less than 20/60 and equal to or better than 20/400 in the better eye with best correction. A best corrected visual acuity of less than 20/400 in the better eye is used to define blindness [4]. A disabling hearing impairment is defined by an average hearing loss in decibel (dB HL) of at least 41 dB HL at 500, 1000, 2000, and 4000 Hz. [5]. Translated to everyday life, such hearing impairment mainly manifests in severe difficulties in understanding normal conversation. Besides differing definitions, different methods to assess vision and hearing impairment and heterogenous study populations make comparisons of prevalence rates difficult [6]. In particular, relying solely on self-report data to assess vision and hearing loss seems generally problematic. In addition, the strong focus in vision impairment assessment on visual acuity measures has limitations, as other indicators, such as contrast sensitivity or useful field of vision, may be more important for out-of-home mobility or driving [7].
A recent study on the prevalence of visual impairment (defined as best corrected visual acuity < 20⁄40) in 6 European countries found quite similar prevalence rates as reported for the US: Prevalence of visual impairment was 3% in those aged 65 to 74 years, 13% in those over 75 years and 33% in those over 85 years [8]. At first glance, vision loss seems to be more prevalent among older women than among older men, but this relationship is not sustained in multivariate analyses considering age, health, and social support variables [9].
Regarding hearing loss, Gopinath et al [10] found prevalence rates of 29% among men and 17% among women aged 60 to 69 years. Moreover, for every 10 years of age, the prevalence of hearing loss doubled. In their review of epidemiologic data on prevalence of age-related hearing impairment in Europe, Roth and coauthors [11] report that at the age of 70 years, about 30% of men and 20% of women were found to have a hearing loss of at least 30 dB HL, while at the age of 80 years about 55% of men and 45% of women were affected. Lin et al found that 63% of those 70 years and older had a hearing loss of more than 25 dB in the better ear [12].
According to a recent review by Schneider et al [6], prevalence of impairment in both vision and hearing in older age (dual sensory impairment) varies between 1.6% and 22.5% due to different sample characteristics (eg, size, age) and different definitions and assessments of vision and hearing impairment (see also [13]). However, there is good evidence that dual sensory impairment increases with age, and that it is more common among frailer subpopulations such as older individuals consulting care services [6].
Quality of Life Impact of Vision and Hearing Impairment
Health and Longevity
There is inconsistent evidence that both age-related vision and hearing impairment are accompanied by heightened multimorbidity and an increased mortality rate. For example, while some older as well as more recent studies have found that visual and hearing declines over time predict death in very old age [14–16], other studies have detected no significant relationship after adjusting for confounders such as age, gender, and education [17,18]. Among the hearing impaired, only men seem to have a significant increase in mortality risk [15,19]. Dual sensory impairment appears to be more consistently and more strongly related to increased mortality than vision or hearing impairment alone [19–21].
Everyday Competence
The term everyday competence includes both basic (eg, self-care behaviors) and instrumental (eg, using public transport) activities of daily living (ADL/IADL [22]). Age-related vision impairment has been found to be robustly associated with significantly lower everyday competence, because visual capacity is a critical prerequisite for such behaviors [23,24]. Indeed, lowered everyday competence appeared as the best of a range of variables (including cognitive function and well-being–related measures) used to differentiate between visually impaired and visually unimpaired older adults [18]. Furthermore, vision impairment impacts cross-sectionally as well as longitudinally—more strongly on IADL as compared to ADL—because the execution of IADL is more complex and depends more strongly on environmental enhancing or hindering factors [25–27]. Hence, shrinkage in IADL competence reflects a kind of early behavioral marker of severe vision impairment, whereas significant ADL decrease only happens later in the process of chronic vision loss.
In contrast to vision impairment, age-related hearing loss has been found not to have a major impact in particular on ADL/IADL [28]. However, as has been found elsewhere [29], hearing loss is associated with increased reliance on community and informal supports, suggesting that while IADL function may not deteriorate with hearing loss, the way it is conducted may change (ie, need for support to maintain participation).
It should also be mentioned in this context that assessment strategies have been developed to better consider the specific life conditions of those with vision and hearing impairment. The best-known and frequently applied instruments in this context are the National Eye Institute Visual Function Questionnaire [30] and the Hearing Handicap Inventory for the Elderly [31].
Cognitive Functioning
Previous research largely supports the notion that reduced vision and hearing function is accompanied by a decrease in cognitive performance in older adults. The work of Lindenberger and Baltes, based on the Berlin Aging Study (BASE)—but also including additional studies with a wider age-range—is central in supporting a strong connection among vision, hearing, balance, and cognitive functioning in later life. Lindenberger and Baltes [32] found that general intelligence correlated just as strongly with visual as with auditory ability. In a model conjoining age, sensory function, as well as intelligence, visual and auditory function predicted a large portion of interindividual differences in intelligence and indeed fully mediated the negative correlation between age and intelligence. This finding has meanwhile been replicated by a number of other research groups and may be regarded as rather robust [33,34]. In addition, Baltes and Lindenberger [35] observed that sensory measures were better predictors of intelligence than socio-structural variables such as education or social class. They also showed that the connection among sensory functioning and intelligence was much closer in older adults as compared to adults in early and middle adulthood [34].
No clear difference between the sensory modalities of vision and hearing has been identified regarding their relationship with cognitive performance. On the one hand, there is research supporting the view that both vision and hearing impairment are connected with cognitive decline [12,36,37], while some evidence also supports that the linkage may be stronger with vision [14]. On the other hand, there are also data not supporting a close connection between vision and hearing impairment and cognitive function [38]. Explanations for such inconsistencies may refer to a number of reasons, such as pronounced positive selectivity of samples (which may lead to underestimation of connections among sensory and cognitive function), the application of established cognitive tests not appropriate for sensory impaired older adults (which may lead to overestimation of connections among sensory and cognitive function), and the application of different cut-off scores for significant vision and hearing impairment (possibly, higher cut-offs may lead to higher, lower to lower connections). Longitudinal data using the latest in causal modeling data analysis support the view that the causal dynamics involved in sensory and intelligence change are complex and that each of these variables can drive change in the other across longer periods of later life [39].
Vision status also plays a role when it comes to the connection between cognitive function and everyday competence—a linkage that is generally challenged as people age and that may lead to endpoints such as dependence on others and transition to long-term care. Heyl et al [40] observed that the link between vision status and out-of-home leisure activities is mediated by cognitive status. In a more recent study, able to add to the understanding of such a mediation process, Heyl and Wahl [38,41] showed that the connection between cognitive function and everyday function is much closer in visually and hearing impaired older adults as compared with visually unimpaired older adults, which possibly means that both visually and hearing impaired elders rely more intensely on their cognitive resources. Causality dynamics may however also work in the opposite direction. As Rovner and colleagues [42,43] observed in a study with age-related macular degeneration patients over 64 years of age covering a 3-year observation period and 2 measurement occasions, activity loss over time due to the visual loss led to cognitive decline happening between T1 and T2. This finding fits well with the more general finding in the cognitive aging literature that the exertion of social and leisure activities is important for maintaining cognitive functioning [44].
Social Functioning
Social relations as well as social support have generally been found to be of key importance for older adults [45]. Reinhardt [46] found that visually impaired older adults nominated on average 5.4 persons of intimate relation within their family network, and 3.5 persons within their friendship network, which is similar to sensory-unimpaired older adults, such as those assessed in the BASE [47]. In addition, in Wahl et al’s study [18], visually and hearing impaired older adults nominated practically the same number of persons as being in the most intimate circle of their social network (4.70 versus 4.71); the respective number in a comparison group of visually unimpaired older adults amounted to 5.2 persons, which was not significantly different from both sensory impaired group means.
Neither vision nor hearing impairment seem to affect the experience of loneliness dramatically [18,23,48], although some research did report an increased risk of loneliness in older adults with vision impairment [49]. It is clear however that hearing impairment more strongly than vision impairment negatively impacts social communication and carries a strong stigma for those affected [48,50]. The stigma particularly implies that hearing deficits and concomitant communication disturbances (eg, giving an answer that does not match the question) elicits the view of a cognitively impaired, if not demented older person. In some contrast, vision loss seems to raise rather strong helping impulses and feelings of compassion. The dark side of this tendency is that it seems a challenge to provide visually impaired older adults with the instrumental support needed while at the same time fostering remaining capabilities [51]. Overprotection may put constraints on the visually impaired older adults’ “true” functional capacity and thereby contribute to loss in competence over the longer run due to disuse [52].
Subjective Well Being–related Outcomes and Depression
Visually impaired older adults have shown evidence of diminished well-being as compared with sensory unimpaired older adults [53], although effect sizes were rather small in a respective meta-analysis [54]. Differences in well-being between hearing impaired and unimpaired older adults seem small or nonexistent in some studies [18,55], but considerable in others [56]. The latter study covering a 16-year observational period as well as other longitudinal work (eg, [57]) also support the notion that remaining ADLs and social engagement mediate the linkage between sensory loss and well-being and depression. The “well-being paradox” in old age, pointing to pronounced adaptive resources to maintain well-being in spite of adverse conditions [58], may also apply to sensory impaired older adults [57,59].
At the same time, it is critical to acknowledge that visually impaired older adults represent an at-risk population, in which the positive impact of human adaptation and the drawback of reaching the limits of psychological resilience go hand in hand. Affect balance (ratio of positive and negative affect) has been found to be more toward the negative pole in visually impaired older adults [60] and depression has consistently been found to be significantly increased in visually impaired older adults [61–63]. Rates roughly vary between 15% and 30% and are particularly high in age-related macular degeneration patients [61]. This is also important, because depressive symptoms may accelerate both cognitive decline and decline in everyday competence in age-related macular degeneration patients [42]. Perceived overprotection may also lead to negative consequences in terms of heightened depression and anxiety over time [64].
Regarding the impact of hearing loss on depression, findings are quite inconsistent. Some studies found evidence for a significant relationship between hearing impairment and depressive symptoms among older adults [65, 66], while others did not [67, 68]. Gopinath and co-workers [66] observed that hearing impaired individuals, particularly women, younger than 70 years of age and those who were infrequently using a hearing aid (less than one hour per day) were more likely to suffer from depressive symptoms. According to a population-based study among older Italians, hearing impairment might be more closely related to anxiety symptoms than to depression [69].
Dual Sensory Impairment
Previous research supports the notion that the overall psychosocial situation of those with dual sensory impairment is even worse as compared to those with sole vision or hearing impairment. In particular, higher rates of ADL/IADL impairment, depression and lowered well-being have been found in older adults affected by dual sensory loss [6,13,18,56]. Also, dual sensory impairment has been found to be linked with cognitive decline cross-sectionally [37] as well as longitudinally [36].
Improving Quality of Life in Sensory Impaired Older Adults
The research summary provided in the previous section underscores that the experience of age-related visual and hearing impairment comes with pronounced challenges that deserve evidence-based professional support. In the following, we give an overview and evaluation of major work in the area of psychosocially framed intervention research targeting older adults with vision and hearing loss. By psychosocially framed interventions we mean studies containing programs that focused on psychosocial processes (eg, consultation on how to better cope with sensory impairment, educative components, problem solving strategies, coping with negative affect) and assessed psychosocial outcomes (eg, everyday functioning, depression, emotional stress experiences). Such interventions may have been integrated into regular rehabilitation programs or offered as a separate strategy in addition to classic rehabilitation. We also consider physical activity–related and overall “way of living” interventions such as tai chi and yoga. In doing so, our aim is to highlight the bandwidth of psychosocial interventions and respective outcomes, not comprehensiveness.
Age-related Vision Impairment
Most psychosocially framed interventions could be characterized as self-management– and disease management–like efforts and are promising for visually impaired older adults. Major elements of such programs include stress-reducing strategies (eg, muscle-relaxation exercises), goal-directed problem-solving, strategies to evoke positive affect, activating available resources, and information and consultation. Typically, such programs are conducted in a group format in an eye clinic, bringing together 6 to 8 visually impaired older adults for weekly sessions of 2 to 3 hours over 6 to 8 weeks.
More recent work provides additional support for the usefulness of self-management programs for visually impaired older adults [72,73]. In addition, emerging evidence supports the notion that psychosocially framed interventions may contribute to saving health costs (eg, via reduced psychopharmacy) and may also enhance commitment
It is also obvious that such programs should find a strong liaison with classic high-caliber rehabilitation programs for visually impaired older adults, including effective reading training [75].
Furthermore, physical training programs, which have proven efficiency with old and very old individuals—including those who are cognitively vulnerable—also seem to be of significant advantage for visually impaired older adults. As has been found, such programs not only increase posture, gait, and general physical fitness, they also prevent falls and enhance well-being, self-efficacy, and cognitive function, especially executive control [76]. Postural control has been improved by multimodal balance and strength exercises among older individuals with visual impairments as well [77]. Participation in physical activity and being in better physical condition buffered the relationship between dual sensory impairment and depression, pointing to the importance of physical training programs for the mental health of older persons with dual sensory impairment [78]. According to a randomized control study as well as to some case studies, tai chi seems to be an effective tool to improve balance control in visually impaired older adults, and thus to reduce an important risk factor for falls [79–81]. Visually impaired adults might also benefit from yoga in terms of balance improvement as well as psychosocial improvements [82]. To teach tai chi efficiently, it is necessary to adapt instructions to the needs of the visually impaired seniors by relying on verbal cuing and manual body placement [80]. The need to adapt instructions and to provide an accessible environment (including transportation arrangements) to motivate older individuals with visual impairments to perform regular physical exercises is also highlighted by Surakka and Kivela [83].
Furthermore, there is evidence that state of the art low vision rehabilitation as such also has beneficial effects on psychosocial outcomes, such as general and vision-related quality of life and emotional well-being.
Age-related Hearing Impairment
Interventions concerning older adults with hearing impairment center on amplification and aural rehabilitation, including auditory training [84]. It has been shown that using hearing aids improves the quality of life, in particular hearing-related quality of life, of hearing impaired adults [85]. Yet many older adults who would benefit from hearing aids do not wear them [86]. From the reasons identified in the review by McCormack and Fortnum [86], perceived hearing aid value, in particular poor benefit in noisy situations, fit and comfort, as well as care and maintenance of the hearing aid emerged as most important. Improvements in these areas are necessary to enhance hearing aid usage among older adults with hearing impairment. Meyer and Hickson [87] identified 5 factors increasing the likelihood to seek help for hearing impairment and/or adopt hearing aids: (1) moderate to severe hearing impairment and perceived hearing-related everyday limitations; (2) older age; (3) poor subjective hearing; (4) perceiving more benefits than barriers to amplification; and (5) perceiving significant others as supportive of hearing rehabilitation. Thus, the involvement of family members in the rehabilitation process appears necessary and promising.
Beyond amplification, aural rehabilitation seeks to improve the situation of hearing impaired older adults by providing listening and communication techniques to enhance communication effectiveness. We have summarized major work in this area in Table 2.
In sum, it seems clear for both vision impairment [95] and hearing impairment [96] that classic rehabilitation strategies, such as fitting a reading device or hearing aid, need significant enrichment by psychosocial training components in order to achieve the best outcomes possible. Furthermore, given the findings on the role of cognitive resources in visually impaired older adults (see respective section above), cognitive training may be an important addition to psychosocial intervention and rehabilitation [38,97]. It must be noted, however, that many of the available studies reveal a number of methodological limitations, such as small sample sizes, missing control condition, and no follow-up assessments to estimate the maintenance of effects.
A significant future need is intervention research addressing older adults with dual sensory impairment. Although we found study protocols related to important trials underway [98,99] and a physical training study with visually impaired older adults that included also some dual sensory impaired individuals [83], it seems that there is not much research in terms of completed interventions and respective findings. Furthermore, it may be important to better involve significant others such as family members and friends in psychosocially framed programs and emerging research with low vision adults has revealed advantages and disadvantages of such an approach [100].
Practical Implications
The older patient is on the way to become the “standard” patient for eye care and hearing specialists and thus a challenge for public health at large. Based on the evidence compiled above, we argue that best practice in medical treatment and traditional rehabilitation of vision and hearing impairment should better consider the psychosocial dimension of age-related vision and hearing impairment. We see different levels at which a stronger psychosocially framed input is needed. First, at the diagnostic level, having a better understanding of everyday competence, the role of cognitive functioning, social resources, and well-being–related dynamics in visually impaired and hearing impaired older adults may significantly enrich the professional background knowledge about the patient. Such knowledge may become important for diagnostic evaluation, treatment decisions, and predictions of long-term outcomes. It seems also critical to have an understanding of the more fundamental mechanisms and systemic inter-relations in older patients (eg, among visual, hearing, mobility, and cognitive impairment), because such evidence helps to evaluate overall vulnerability and likely future trajectories of respective patients.
Second, at the intervention level against the background of the available empirical effectiveness evidence, self-management–oriented and psycho-educative programs should become a regular component of low vision rehabilitation. Similarly, psychosocial programs educating older adults in hearing tactics and hearing loss–oriented coping strategies should become a regular part of hearing rehabilitation. In addition, we argue that cognitive training and physical activity–oriented interventions should have their place in rehabilitation programs designed for older visually and hearing impaired adults. The major reason is that respective programs generally have been found to positively impact quality of life in old age. This impact may be particularly valuable for more vulnerable populations, such as sensory impaired older adults. We therefore recommend implementing psychosocially framed programs as a regular service in eye clinics as well as in ear, nose, and throat clinics, because this seems to be the setting best suited to approach visually and hearing impaired older adults as well as to offer the logistic opportunities to conduct such programs. It would also be critical to extend such programs to in-home services as well as services covering long-term care settings. Older adults with dual sensory impairment bring specific challenges to such interventions, such as the optimal cooperation and combination of rehabilitation and psychosocial expertise related to each domain and traditionally offered side by side. It is also good news that new trials are underway to learn more about psychosocial interventions aimed to address older adults with dual sensory loss [98,99].
In conclusion, we argue for a better implementation of both age-related psycho-ophthalmology as well as psycho-audiology. Although we regard psychologists with a clinical training background as a key profession to be involved in psychosocially framed interventions with older adults with vision and hearing impairment, other professions (eg, occupational therapists, sport scientists) should also play an important role. A multiprofessional enrichment of classic sensory rehabilitation based on the training principles as described above is a major future need.
Corresponding author: Vera Heyl, PhD, Zeppelinstr, 1, D-69121, Heidelberg, Germany, [email protected].
Financial disclosures: None.
From the University of Education (Dr. Heyl) and Heidelberg University (Dr. Wahl), Heidelberg, Germany.
Abstract
- Objective: To summarize the current state of research regarding the experience of age-related vision and hearing impairment.
- Methods:Review of the literature.
- Results: Negative consequences of age-related vision and hearing impairment manifest in the domains of health and longevity, everyday competence, cognitive functioning, social functioning, and subjective well-being. However, while vision impairment strongly impacts everyday competence, the burden of hearing impairment can mainly be found in the social domain. Psychosocially framed intervention research has shown promising findings, but many studies rely on small samples or do not include a control condition.
- Conclusions: Although more research is needed, it is clear that traditional rehabilitation programs targeting age-related vision and hearing impairments need a strong psychosocial component.
Vision and hearing are essential for person–environment interaction and both are subject to pronounced age-related changes. Ongoing demographic changes and increasing life expectancy is contributing to a significant increase in the number of very old individuals [1]. It is projected that by 2030 about 50% of older Americans may have some significant eye disease, ie, cataract, glaucoma, or age-related macular degeneration [2]. Presbycusis as the major cause of age-related hearing impairment is present in 40% of the American senior citizens [3]. In this narrative review, we review the epidemiological data on age-related vision and hearing impairment, research on its psychosocial impact, and intervention research aimed to improve coping processes and rehabilitative outcomes. We close with future recommendations directed both toward research and clinical practice.
Epidemiology
Vision and hearing impairment is highly prevalent in old age, yet prevalence rates reported in the literature are quite different, depending on the definition of vision and hearing impairment used. A widely used criterion for low vision is the one used by the World Health Organization, ie, visual acuity less than 20/60 and equal to or better than 20/400 in the better eye with best correction. A best corrected visual acuity of less than 20/400 in the better eye is used to define blindness [4]. A disabling hearing impairment is defined by an average hearing loss in decibel (dB HL) of at least 41 dB HL at 500, 1000, 2000, and 4000 Hz. [5]. Translated to everyday life, such hearing impairment mainly manifests in severe difficulties in understanding normal conversation. Besides differing definitions, different methods to assess vision and hearing impairment and heterogenous study populations make comparisons of prevalence rates difficult [6]. In particular, relying solely on self-report data to assess vision and hearing loss seems generally problematic. In addition, the strong focus in vision impairment assessment on visual acuity measures has limitations, as other indicators, such as contrast sensitivity or useful field of vision, may be more important for out-of-home mobility or driving [7].
A recent study on the prevalence of visual impairment (defined as best corrected visual acuity < 20⁄40) in 6 European countries found quite similar prevalence rates as reported for the US: Prevalence of visual impairment was 3% in those aged 65 to 74 years, 13% in those over 75 years and 33% in those over 85 years [8]. At first glance, vision loss seems to be more prevalent among older women than among older men, but this relationship is not sustained in multivariate analyses considering age, health, and social support variables [9].
Regarding hearing loss, Gopinath et al [10] found prevalence rates of 29% among men and 17% among women aged 60 to 69 years. Moreover, for every 10 years of age, the prevalence of hearing loss doubled. In their review of epidemiologic data on prevalence of age-related hearing impairment in Europe, Roth and coauthors [11] report that at the age of 70 years, about 30% of men and 20% of women were found to have a hearing loss of at least 30 dB HL, while at the age of 80 years about 55% of men and 45% of women were affected. Lin et al found that 63% of those 70 years and older had a hearing loss of more than 25 dB in the better ear [12].
According to a recent review by Schneider et al [6], prevalence of impairment in both vision and hearing in older age (dual sensory impairment) varies between 1.6% and 22.5% due to different sample characteristics (eg, size, age) and different definitions and assessments of vision and hearing impairment (see also [13]). However, there is good evidence that dual sensory impairment increases with age, and that it is more common among frailer subpopulations such as older individuals consulting care services [6].
Quality of Life Impact of Vision and Hearing Impairment
Health and Longevity
There is inconsistent evidence that both age-related vision and hearing impairment are accompanied by heightened multimorbidity and an increased mortality rate. For example, while some older as well as more recent studies have found that visual and hearing declines over time predict death in very old age [14–16], other studies have detected no significant relationship after adjusting for confounders such as age, gender, and education [17,18]. Among the hearing impaired, only men seem to have a significant increase in mortality risk [15,19]. Dual sensory impairment appears to be more consistently and more strongly related to increased mortality than vision or hearing impairment alone [19–21].
Everyday Competence
The term everyday competence includes both basic (eg, self-care behaviors) and instrumental (eg, using public transport) activities of daily living (ADL/IADL [22]). Age-related vision impairment has been found to be robustly associated with significantly lower everyday competence, because visual capacity is a critical prerequisite for such behaviors [23,24]. Indeed, lowered everyday competence appeared as the best of a range of variables (including cognitive function and well-being–related measures) used to differentiate between visually impaired and visually unimpaired older adults [18]. Furthermore, vision impairment impacts cross-sectionally as well as longitudinally—more strongly on IADL as compared to ADL—because the execution of IADL is more complex and depends more strongly on environmental enhancing or hindering factors [25–27]. Hence, shrinkage in IADL competence reflects a kind of early behavioral marker of severe vision impairment, whereas significant ADL decrease only happens later in the process of chronic vision loss.
In contrast to vision impairment, age-related hearing loss has been found not to have a major impact in particular on ADL/IADL [28]. However, as has been found elsewhere [29], hearing loss is associated with increased reliance on community and informal supports, suggesting that while IADL function may not deteriorate with hearing loss, the way it is conducted may change (ie, need for support to maintain participation).
It should also be mentioned in this context that assessment strategies have been developed to better consider the specific life conditions of those with vision and hearing impairment. The best-known and frequently applied instruments in this context are the National Eye Institute Visual Function Questionnaire [30] and the Hearing Handicap Inventory for the Elderly [31].
Cognitive Functioning
Previous research largely supports the notion that reduced vision and hearing function is accompanied by a decrease in cognitive performance in older adults. The work of Lindenberger and Baltes, based on the Berlin Aging Study (BASE)—but also including additional studies with a wider age-range—is central in supporting a strong connection among vision, hearing, balance, and cognitive functioning in later life. Lindenberger and Baltes [32] found that general intelligence correlated just as strongly with visual as with auditory ability. In a model conjoining age, sensory function, as well as intelligence, visual and auditory function predicted a large portion of interindividual differences in intelligence and indeed fully mediated the negative correlation between age and intelligence. This finding has meanwhile been replicated by a number of other research groups and may be regarded as rather robust [33,34]. In addition, Baltes and Lindenberger [35] observed that sensory measures were better predictors of intelligence than socio-structural variables such as education or social class. They also showed that the connection among sensory functioning and intelligence was much closer in older adults as compared to adults in early and middle adulthood [34].
No clear difference between the sensory modalities of vision and hearing has been identified regarding their relationship with cognitive performance. On the one hand, there is research supporting the view that both vision and hearing impairment are connected with cognitive decline [12,36,37], while some evidence also supports that the linkage may be stronger with vision [14]. On the other hand, there are also data not supporting a close connection between vision and hearing impairment and cognitive function [38]. Explanations for such inconsistencies may refer to a number of reasons, such as pronounced positive selectivity of samples (which may lead to underestimation of connections among sensory and cognitive function), the application of established cognitive tests not appropriate for sensory impaired older adults (which may lead to overestimation of connections among sensory and cognitive function), and the application of different cut-off scores for significant vision and hearing impairment (possibly, higher cut-offs may lead to higher, lower to lower connections). Longitudinal data using the latest in causal modeling data analysis support the view that the causal dynamics involved in sensory and intelligence change are complex and that each of these variables can drive change in the other across longer periods of later life [39].
Vision status also plays a role when it comes to the connection between cognitive function and everyday competence—a linkage that is generally challenged as people age and that may lead to endpoints such as dependence on others and transition to long-term care. Heyl et al [40] observed that the link between vision status and out-of-home leisure activities is mediated by cognitive status. In a more recent study, able to add to the understanding of such a mediation process, Heyl and Wahl [38,41] showed that the connection between cognitive function and everyday function is much closer in visually and hearing impaired older adults as compared with visually unimpaired older adults, which possibly means that both visually and hearing impaired elders rely more intensely on their cognitive resources. Causality dynamics may however also work in the opposite direction. As Rovner and colleagues [42,43] observed in a study with age-related macular degeneration patients over 64 years of age covering a 3-year observation period and 2 measurement occasions, activity loss over time due to the visual loss led to cognitive decline happening between T1 and T2. This finding fits well with the more general finding in the cognitive aging literature that the exertion of social and leisure activities is important for maintaining cognitive functioning [44].
Social Functioning
Social relations as well as social support have generally been found to be of key importance for older adults [45]. Reinhardt [46] found that visually impaired older adults nominated on average 5.4 persons of intimate relation within their family network, and 3.5 persons within their friendship network, which is similar to sensory-unimpaired older adults, such as those assessed in the BASE [47]. In addition, in Wahl et al’s study [18], visually and hearing impaired older adults nominated practically the same number of persons as being in the most intimate circle of their social network (4.70 versus 4.71); the respective number in a comparison group of visually unimpaired older adults amounted to 5.2 persons, which was not significantly different from both sensory impaired group means.
Neither vision nor hearing impairment seem to affect the experience of loneliness dramatically [18,23,48], although some research did report an increased risk of loneliness in older adults with vision impairment [49]. It is clear however that hearing impairment more strongly than vision impairment negatively impacts social communication and carries a strong stigma for those affected [48,50]. The stigma particularly implies that hearing deficits and concomitant communication disturbances (eg, giving an answer that does not match the question) elicits the view of a cognitively impaired, if not demented older person. In some contrast, vision loss seems to raise rather strong helping impulses and feelings of compassion. The dark side of this tendency is that it seems a challenge to provide visually impaired older adults with the instrumental support needed while at the same time fostering remaining capabilities [51]. Overprotection may put constraints on the visually impaired older adults’ “true” functional capacity and thereby contribute to loss in competence over the longer run due to disuse [52].
Subjective Well Being–related Outcomes and Depression
Visually impaired older adults have shown evidence of diminished well-being as compared with sensory unimpaired older adults [53], although effect sizes were rather small in a respective meta-analysis [54]. Differences in well-being between hearing impaired and unimpaired older adults seem small or nonexistent in some studies [18,55], but considerable in others [56]. The latter study covering a 16-year observational period as well as other longitudinal work (eg, [57]) also support the notion that remaining ADLs and social engagement mediate the linkage between sensory loss and well-being and depression. The “well-being paradox” in old age, pointing to pronounced adaptive resources to maintain well-being in spite of adverse conditions [58], may also apply to sensory impaired older adults [57,59].
At the same time, it is critical to acknowledge that visually impaired older adults represent an at-risk population, in which the positive impact of human adaptation and the drawback of reaching the limits of psychological resilience go hand in hand. Affect balance (ratio of positive and negative affect) has been found to be more toward the negative pole in visually impaired older adults [60] and depression has consistently been found to be significantly increased in visually impaired older adults [61–63]. Rates roughly vary between 15% and 30% and are particularly high in age-related macular degeneration patients [61]. This is also important, because depressive symptoms may accelerate both cognitive decline and decline in everyday competence in age-related macular degeneration patients [42]. Perceived overprotection may also lead to negative consequences in terms of heightened depression and anxiety over time [64].
Regarding the impact of hearing loss on depression, findings are quite inconsistent. Some studies found evidence for a significant relationship between hearing impairment and depressive symptoms among older adults [65, 66], while others did not [67, 68]. Gopinath and co-workers [66] observed that hearing impaired individuals, particularly women, younger than 70 years of age and those who were infrequently using a hearing aid (less than one hour per day) were more likely to suffer from depressive symptoms. According to a population-based study among older Italians, hearing impairment might be more closely related to anxiety symptoms than to depression [69].
Dual Sensory Impairment
Previous research supports the notion that the overall psychosocial situation of those with dual sensory impairment is even worse as compared to those with sole vision or hearing impairment. In particular, higher rates of ADL/IADL impairment, depression and lowered well-being have been found in older adults affected by dual sensory loss [6,13,18,56]. Also, dual sensory impairment has been found to be linked with cognitive decline cross-sectionally [37] as well as longitudinally [36].
Improving Quality of Life in Sensory Impaired Older Adults
The research summary provided in the previous section underscores that the experience of age-related visual and hearing impairment comes with pronounced challenges that deserve evidence-based professional support. In the following, we give an overview and evaluation of major work in the area of psychosocially framed intervention research targeting older adults with vision and hearing loss. By psychosocially framed interventions we mean studies containing programs that focused on psychosocial processes (eg, consultation on how to better cope with sensory impairment, educative components, problem solving strategies, coping with negative affect) and assessed psychosocial outcomes (eg, everyday functioning, depression, emotional stress experiences). Such interventions may have been integrated into regular rehabilitation programs or offered as a separate strategy in addition to classic rehabilitation. We also consider physical activity–related and overall “way of living” interventions such as tai chi and yoga. In doing so, our aim is to highlight the bandwidth of psychosocial interventions and respective outcomes, not comprehensiveness.
Age-related Vision Impairment
Most psychosocially framed interventions could be characterized as self-management– and disease management–like efforts and are promising for visually impaired older adults. Major elements of such programs include stress-reducing strategies (eg, muscle-relaxation exercises), goal-directed problem-solving, strategies to evoke positive affect, activating available resources, and information and consultation. Typically, such programs are conducted in a group format in an eye clinic, bringing together 6 to 8 visually impaired older adults for weekly sessions of 2 to 3 hours over 6 to 8 weeks.
More recent work provides additional support for the usefulness of self-management programs for visually impaired older adults [72,73]. In addition, emerging evidence supports the notion that psychosocially framed interventions may contribute to saving health costs (eg, via reduced psychopharmacy) and may also enhance commitment
It is also obvious that such programs should find a strong liaison with classic high-caliber rehabilitation programs for visually impaired older adults, including effective reading training [75].
Furthermore, physical training programs, which have proven efficiency with old and very old individuals—including those who are cognitively vulnerable—also seem to be of significant advantage for visually impaired older adults. As has been found, such programs not only increase posture, gait, and general physical fitness, they also prevent falls and enhance well-being, self-efficacy, and cognitive function, especially executive control [76]. Postural control has been improved by multimodal balance and strength exercises among older individuals with visual impairments as well [77]. Participation in physical activity and being in better physical condition buffered the relationship between dual sensory impairment and depression, pointing to the importance of physical training programs for the mental health of older persons with dual sensory impairment [78]. According to a randomized control study as well as to some case studies, tai chi seems to be an effective tool to improve balance control in visually impaired older adults, and thus to reduce an important risk factor for falls [79–81]. Visually impaired adults might also benefit from yoga in terms of balance improvement as well as psychosocial improvements [82]. To teach tai chi efficiently, it is necessary to adapt instructions to the needs of the visually impaired seniors by relying on verbal cuing and manual body placement [80]. The need to adapt instructions and to provide an accessible environment (including transportation arrangements) to motivate older individuals with visual impairments to perform regular physical exercises is also highlighted by Surakka and Kivela [83].
Furthermore, there is evidence that state of the art low vision rehabilitation as such also has beneficial effects on psychosocial outcomes, such as general and vision-related quality of life and emotional well-being.
Age-related Hearing Impairment
Interventions concerning older adults with hearing impairment center on amplification and aural rehabilitation, including auditory training [84]. It has been shown that using hearing aids improves the quality of life, in particular hearing-related quality of life, of hearing impaired adults [85]. Yet many older adults who would benefit from hearing aids do not wear them [86]. From the reasons identified in the review by McCormack and Fortnum [86], perceived hearing aid value, in particular poor benefit in noisy situations, fit and comfort, as well as care and maintenance of the hearing aid emerged as most important. Improvements in these areas are necessary to enhance hearing aid usage among older adults with hearing impairment. Meyer and Hickson [87] identified 5 factors increasing the likelihood to seek help for hearing impairment and/or adopt hearing aids: (1) moderate to severe hearing impairment and perceived hearing-related everyday limitations; (2) older age; (3) poor subjective hearing; (4) perceiving more benefits than barriers to amplification; and (5) perceiving significant others as supportive of hearing rehabilitation. Thus, the involvement of family members in the rehabilitation process appears necessary and promising.
Beyond amplification, aural rehabilitation seeks to improve the situation of hearing impaired older adults by providing listening and communication techniques to enhance communication effectiveness. We have summarized major work in this area in Table 2.
In sum, it seems clear for both vision impairment [95] and hearing impairment [96] that classic rehabilitation strategies, such as fitting a reading device or hearing aid, need significant enrichment by psychosocial training components in order to achieve the best outcomes possible. Furthermore, given the findings on the role of cognitive resources in visually impaired older adults (see respective section above), cognitive training may be an important addition to psychosocial intervention and rehabilitation [38,97]. It must be noted, however, that many of the available studies reveal a number of methodological limitations, such as small sample sizes, missing control condition, and no follow-up assessments to estimate the maintenance of effects.
A significant future need is intervention research addressing older adults with dual sensory impairment. Although we found study protocols related to important trials underway [98,99] and a physical training study with visually impaired older adults that included also some dual sensory impaired individuals [83], it seems that there is not much research in terms of completed interventions and respective findings. Furthermore, it may be important to better involve significant others such as family members and friends in psychosocially framed programs and emerging research with low vision adults has revealed advantages and disadvantages of such an approach [100].
Practical Implications
The older patient is on the way to become the “standard” patient for eye care and hearing specialists and thus a challenge for public health at large. Based on the evidence compiled above, we argue that best practice in medical treatment and traditional rehabilitation of vision and hearing impairment should better consider the psychosocial dimension of age-related vision and hearing impairment. We see different levels at which a stronger psychosocially framed input is needed. First, at the diagnostic level, having a better understanding of everyday competence, the role of cognitive functioning, social resources, and well-being–related dynamics in visually impaired and hearing impaired older adults may significantly enrich the professional background knowledge about the patient. Such knowledge may become important for diagnostic evaluation, treatment decisions, and predictions of long-term outcomes. It seems also critical to have an understanding of the more fundamental mechanisms and systemic inter-relations in older patients (eg, among visual, hearing, mobility, and cognitive impairment), because such evidence helps to evaluate overall vulnerability and likely future trajectories of respective patients.
Second, at the intervention level against the background of the available empirical effectiveness evidence, self-management–oriented and psycho-educative programs should become a regular component of low vision rehabilitation. Similarly, psychosocial programs educating older adults in hearing tactics and hearing loss–oriented coping strategies should become a regular part of hearing rehabilitation. In addition, we argue that cognitive training and physical activity–oriented interventions should have their place in rehabilitation programs designed for older visually and hearing impaired adults. The major reason is that respective programs generally have been found to positively impact quality of life in old age. This impact may be particularly valuable for more vulnerable populations, such as sensory impaired older adults. We therefore recommend implementing psychosocially framed programs as a regular service in eye clinics as well as in ear, nose, and throat clinics, because this seems to be the setting best suited to approach visually and hearing impaired older adults as well as to offer the logistic opportunities to conduct such programs. It would also be critical to extend such programs to in-home services as well as services covering long-term care settings. Older adults with dual sensory impairment bring specific challenges to such interventions, such as the optimal cooperation and combination of rehabilitation and psychosocial expertise related to each domain and traditionally offered side by side. It is also good news that new trials are underway to learn more about psychosocial interventions aimed to address older adults with dual sensory loss [98,99].
In conclusion, we argue for a better implementation of both age-related psycho-ophthalmology as well as psycho-audiology. Although we regard psychologists with a clinical training background as a key profession to be involved in psychosocially framed interventions with older adults with vision and hearing impairment, other professions (eg, occupational therapists, sport scientists) should also play an important role. A multiprofessional enrichment of classic sensory rehabilitation based on the training principles as described above is a major future need.
Corresponding author: Vera Heyl, PhD, Zeppelinstr, 1, D-69121, Heidelberg, Germany, [email protected].
Financial disclosures: None.
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86. McCormack A, Fortnum H. Why do people fitted with hearing aids not wear them? Int J Audiol 2013 52:360-8.
87. Meyer C, Hickson L. What factors influence help-seeking for hearing impairment and hearing aid adoption in older adults? Int J Audiol 2012;51:66-74.
88. Andersson G, Green M, Melin L. Behavioural hearing tactics: a controlled trial of a short treatment programme. Behav Res Ther 1997;35:523-30.
89. Andersson G, Melin L, Scott B, et al. Behavioural counselling for subjects with acquired hearing loss. A new approach to hearing tactics. Scandinav Audiol 1994;23:249-56.
90. Burk MH, Humes LE. Effects of long-term training on aided speech-recognition performance in noise in older adults. J Speech Lang Hear Res 2008;51:759-71.
91. Henderson Sabes J, Sweetow RW. Variables predicting outcomes on listening and communication enhancement (LACETM) training. Int J Audiol 2007;46:374-83.
92. Kramer SE, Allessie GH, Dondorp AW, et al. A home education program for older adults with hearing impairment and their significant others: a randomized trial evaluating short- and long-term effects. Int J Audiol 2005;44:255-64.
93. Hickson L, Worrall L, Scarinci N. Measuring outcomes of a communication program for older people with hearing impairment using the International Outcome Inventory. Int J Audiol 2006;45:238-46.
94. Barcroft J, Sommers MS, Tye-Murray N, et al. Tailoring auditory training to patient needs with single and multiple talkers: Transfer-appropriate gains on a four-choice discrimination test. Int J Audiol 2011;50:802-8.
95. Wahl H-W. The psychological challenge of late-life vision impairment: Concepts, Findings, and practical implications. J Ophthalmol 2013.
96. Lin FR. Hearing loss in older adults. Who’s listening? JAMA 2012;307:1147-8.
97. Willis SL, Tennstedt SL, Marsiske M, et al. Long-term effects of cognitive training on everyday functional outcomes in older adults. JAMA 2006;296:2805-14.
98. Roets-Merken LM, Graff MJL, Zuidema SU, et al. Effectiveness of a self-management program for dual sensory impaired seniors in aged care settings: study protocol for a cluster randomized controlled trial. Trials 2013;14.
99. Vreeken HL, van Rens GHMB, Kramer SE, et al. Dual sensory loss: development of a dual sensory loss protocol and design of a randomized controlled trial. BMC Geriatr 2013;13.
100. Rees G, Saw C, Larizza M, et al. Should family and friends be involved in group-based rehabilitation programs for adults with low vision? Br J Visual Impair 2007;25:155-68.
101. Birk T, Hickl S, Wahl H-W, et al. Development and pilot evaluation of a psychosocial intervention program for patients with age-related macular degeneration. Gerontologist 2004;44:836-43.
102. Bradley P, Mitchell J, Bradley C, editors. Peer support for people newly diagnosed with macular degeneration: a pilot study. International Congress Vision 2005 September. London, UK.
103. Brody B, Williams R, Thomas R, et al. Age-related macular degeneration: A randomized clinical trial of a self-management intervention. Ann Behavi Med 1999;21:322-9.
104. Brody BL, Roch-Levecq A-C, Gamst AC, et al. Self-management of age-related macular degeneration and quality of life: a randomized controlled trial. Arch Ophthalmol 2002;120:1477-83.
105. Brody BL, Roch-Levecq A-C, Thomas RG, et al. Self-management of age-related macular degeneration at the 6-month follow-up. a randomized controlled trial. Arch Ophthalmol 2005;123:46-53.
106. Brody BL, Roch-Levecq A-C, Kaplan RM, et al. Age-related macular degeneration: self-management and reduction of depressive symptoms in a randomized, controlled study. J Am Geriatr Soc 2006;54:1557-62.
107. Dahlin-Ivanoff S, Sonn U, Svensson E. A health education program for elderly persons with visual impairments and perceived security in the performance of daily occupations: a randomized study. Am J Occup Thera 2002;56:322-30.
108. Eklund K, Sonn U, Dahlin-Ivanoff S. Long-term evaluation of a health education programme for elderly persons with visual impairment. A randomized study. Disabil Rehab 2004;26:401-9.
109. Eklund K, Dahlin-Ivanoff S. Health education for people with macular degeneration: Learning experiences and the effect on daily occupations. Can J Occup Ther 2006;73:272-80.
110. Eklund K, Sjöstrand J, Dahlin-Ivanoff S. A randomized controlled trial of a health-promotion programme and its effect on ADL dependence and self-reported health problems for the elderly visually impaired. Scand J Occupat Ther 2008;15:68-74.
111. Kämmerer A, Wahl H-W, Becker S, et al. Psychosoziale Unterstützung von älteren Menschen mit einer chronischen Sehbeeinträchtigung: Anwendung und Überprüfung einer problemlöse- und einer emotionsfokussierten Kurzintervention. Zeitschrift für Gesundheitspsychologie 2006;14:95-105.
112. Rovner BW, Casten RJ, Hegel MT, et al. Preventing depression in age-related macular degeneration. Arch Gen Psychiatr 2007;64:886-92.
113. Rovner BW, Casten RJ, Hegel MT, et al. Improving function in age-related macular degeneration: A randomized clinical trial. Ophthalmology 2013;120:1649-55.
114. Barcroft J, Mauzé E, Schroy C, et al. Improving the quality of auditory training by making tasks meaningful. Persp Audiol 2011;7:15-28.
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85. Chisolm TH, Johnson CE, Danhauer JL, et al. A systematic review of health-related quality of life and hearing aids: Final report of the American Academy of Audiology Task Force on the Health-Related Quality of Life Benefits of Amplification in Adults. J Am Acad Audiol 2007;18:151-83.
86. McCormack A, Fortnum H. Why do people fitted with hearing aids not wear them? Int J Audiol 2013 52:360-8.
87. Meyer C, Hickson L. What factors influence help-seeking for hearing impairment and hearing aid adoption in older adults? Int J Audiol 2012;51:66-74.
88. Andersson G, Green M, Melin L. Behavioural hearing tactics: a controlled trial of a short treatment programme. Behav Res Ther 1997;35:523-30.
89. Andersson G, Melin L, Scott B, et al. Behavioural counselling for subjects with acquired hearing loss. A new approach to hearing tactics. Scandinav Audiol 1994;23:249-56.
90. Burk MH, Humes LE. Effects of long-term training on aided speech-recognition performance in noise in older adults. J Speech Lang Hear Res 2008;51:759-71.
91. Henderson Sabes J, Sweetow RW. Variables predicting outcomes on listening and communication enhancement (LACETM) training. Int J Audiol 2007;46:374-83.
92. Kramer SE, Allessie GH, Dondorp AW, et al. A home education program for older adults with hearing impairment and their significant others: a randomized trial evaluating short- and long-term effects. Int J Audiol 2005;44:255-64.
93. Hickson L, Worrall L, Scarinci N. Measuring outcomes of a communication program for older people with hearing impairment using the International Outcome Inventory. Int J Audiol 2006;45:238-46.
94. Barcroft J, Sommers MS, Tye-Murray N, et al. Tailoring auditory training to patient needs with single and multiple talkers: Transfer-appropriate gains on a four-choice discrimination test. Int J Audiol 2011;50:802-8.
95. Wahl H-W. The psychological challenge of late-life vision impairment: Concepts, Findings, and practical implications. J Ophthalmol 2013.
96. Lin FR. Hearing loss in older adults. Who’s listening? JAMA 2012;307:1147-8.
97. Willis SL, Tennstedt SL, Marsiske M, et al. Long-term effects of cognitive training on everyday functional outcomes in older adults. JAMA 2006;296:2805-14.
98. Roets-Merken LM, Graff MJL, Zuidema SU, et al. Effectiveness of a self-management program for dual sensory impaired seniors in aged care settings: study protocol for a cluster randomized controlled trial. Trials 2013;14.
99. Vreeken HL, van Rens GHMB, Kramer SE, et al. Dual sensory loss: development of a dual sensory loss protocol and design of a randomized controlled trial. BMC Geriatr 2013;13.
100. Rees G, Saw C, Larizza M, et al. Should family and friends be involved in group-based rehabilitation programs for adults with low vision? Br J Visual Impair 2007;25:155-68.
101. Birk T, Hickl S, Wahl H-W, et al. Development and pilot evaluation of a psychosocial intervention program for patients with age-related macular degeneration. Gerontologist 2004;44:836-43.
102. Bradley P, Mitchell J, Bradley C, editors. Peer support for people newly diagnosed with macular degeneration: a pilot study. International Congress Vision 2005 September. London, UK.
103. Brody B, Williams R, Thomas R, et al. Age-related macular degeneration: A randomized clinical trial of a self-management intervention. Ann Behavi Med 1999;21:322-9.
104. Brody BL, Roch-Levecq A-C, Gamst AC, et al. Self-management of age-related macular degeneration and quality of life: a randomized controlled trial. Arch Ophthalmol 2002;120:1477-83.
105. Brody BL, Roch-Levecq A-C, Thomas RG, et al. Self-management of age-related macular degeneration at the 6-month follow-up. a randomized controlled trial. Arch Ophthalmol 2005;123:46-53.
106. Brody BL, Roch-Levecq A-C, Kaplan RM, et al. Age-related macular degeneration: self-management and reduction of depressive symptoms in a randomized, controlled study. J Am Geriatr Soc 2006;54:1557-62.
107. Dahlin-Ivanoff S, Sonn U, Svensson E. A health education program for elderly persons with visual impairments and perceived security in the performance of daily occupations: a randomized study. Am J Occup Thera 2002;56:322-30.
108. Eklund K, Sonn U, Dahlin-Ivanoff S. Long-term evaluation of a health education programme for elderly persons with visual impairment. A randomized study. Disabil Rehab 2004;26:401-9.
109. Eklund K, Dahlin-Ivanoff S. Health education for people with macular degeneration: Learning experiences and the effect on daily occupations. Can J Occup Ther 2006;73:272-80.
110. Eklund K, Sjöstrand J, Dahlin-Ivanoff S. A randomized controlled trial of a health-promotion programme and its effect on ADL dependence and self-reported health problems for the elderly visually impaired. Scand J Occupat Ther 2008;15:68-74.
111. Kämmerer A, Wahl H-W, Becker S, et al. Psychosoziale Unterstützung von älteren Menschen mit einer chronischen Sehbeeinträchtigung: Anwendung und Überprüfung einer problemlöse- und einer emotionsfokussierten Kurzintervention. Zeitschrift für Gesundheitspsychologie 2006;14:95-105.
112. Rovner BW, Casten RJ, Hegel MT, et al. Preventing depression in age-related macular degeneration. Arch Gen Psychiatr 2007;64:886-92.
113. Rovner BW, Casten RJ, Hegel MT, et al. Improving function in age-related macular degeneration: A randomized clinical trial. Ophthalmology 2013;120:1649-55.
114. Barcroft J, Mauzé E, Schroy C, et al. Improving the quality of auditory training by making tasks meaningful. Persp Audiol 2011;7:15-28.
Using Patient Navigators to Help Adults with Sickle Cell Disease Obtain a Primary Care Home
From the Colorado Sickle Cell Network, University of Colorado School of Medicine, Aurora, CO.
This article is the fifth in our Hemoglobinopathy Learning Collaborative series. See the related editorial by Oyeku et al in the February 2014 issue of JCOM. (—Ed.)
Abstract
- Objective: To describe the development and implementation of a patient navigation program to help individuals with sickle cell disease (SCD) overcome barriers to finding adult primary care.
- Methods: Six patient navigators were recruited and received training. A workgroup was formed to clarify goals and objectives and develop standard procedures. Navigators were instrumental in establishing a network of primary care offices that were willing to accept new patients with SCD. Navigators assisted patients in making calls to primary care offices and in some cases would attend appointments with them.
- Results: About two-thirds of patients who were referred to the navigator program for primary care follow-up attended an initial appointment with a new primary care provider.
- Conclusion: Patient navigation is a feasible and useful strategy to help individuals with SCD overcome barriers to receiving comprehensive care.
With advances in the management of sickle cell disease (SCD), adults with SCD are living longer [1,2]. Adequate care for individuals with SCD requires that they receive both specialized services and comprehensive primary care. A lack of comprehensive outpatient care can translate into suboptimal outcomes and increased reliance on the emergency room [3].
In the metropolitan area of Denver, specialty care for individuals with SCD is centralized and easily accessible at a tertiary academic medical center. However, we found that many adult patients treated in our specialty setting had not established care with an adult primary care provider (PCP) or had not been seen regularly by their PCP for ongoing preventive primary care services. Thus, they were not getting their comprehensive care needs met. Although support was available from community-based organizations to help them access certain resources (eg, directions to the food bank), patients reported difficulties in accessing the adult care health system, for example, securing appointments with PCPs and securing/maintaining insurance. No services existed to specifically help them navigate through the complexities of obtaining needed care.
Patient navigation is a strategy commonly used in cancer care settings [4–7] to to help patients overcome barriers in accessing the health care system. Patient navigators can not only facilitate improved health care access and quality for underserved populations through advocacy and care coordination, but they can also address the information needs of patients and assist in overcoming language and cultural barriers. Navigation has been proposed as a strategy to help reduce health disparities [8].
We developed a patient navigation program to address unmet needs of children and adults with SCD receving care in our clinics. In this paper we describe our program.
Patient Navigator Program
Setting
The SCD Treatment Demonstration Program was created in 2004 by the federal government to improve care and outcomes for persons with SCD [9]. As a grantee of this program, we developed the Colorado Sickle Cell Care Network (CSCCN) to care for scd patients in the Denver metropolitan and surrounding area. The CSCCN is a collaboration between the Colorado Sickle Cell Treatment and Research Center and the Division of General Internal Medicine and Department of Hematology at the University of Colorado Denver Anschutz Medical Campus, the Center for Cancer and Blood Disorders at Children’s Hospital Colorado, and 2 community-based organizations. With other grantees, we are participating in the Hemoglobinopathy Learning Collaborative, a collaborative of teams utilizing iterative cycles of testing to learn what changes can be made to improve care processes [10].
Navigators
We developed the patient navigator program to help patients overcome barriers to receiving comprehensive care in a primary care medical home. We hired 4 patient navigators to serve individuals living in or seeking resources in the Denver metropolitan area. Persons interested in being navigators were required to first qualify to be official hospital volunteers at the University of Colorado Hospital and Children’s Hospital Colorado, a process that involved attending an orientation and obtaining official facility badging. They received patient navigation training at the Harold P. Freeman Patient Navigation Institute in New York [11] as well as completed the Colorado Patient Navigator Training Program [12]. Navigators in training learned about the history of patient navigation, health promotion and communication models, motivational interviewing techniques, and systemic and individual barriers to care. All patient navigators received training in HIPAA and went through a volunteer credentialing process at the hospital; however they do not have access to patient’s medical records or the electronic health records.
The navigators are from various backgrounds, and 2 of our patient navigators are bilingual Spanish-English speakers, enhancing our ability to outreach to individuals whose preferred language is Spanish and who may otherwise not be able to access available resources. Some of our patient navigators are family members of individuals being treated for SCD and are able to provide a unique perspective that aids program development.
Once training for the initial group of navigators was completed, a patient navigation workgroup was created to clarify goals and objectives, develop standard procedures, and define navigator responsibilities. This workgroup included the CSCCN program staff, adult and pediatric hematology trained SCD specialists, and the pediatric coordinator. We used the Hemoglobinopathy Learning Collaborative process [10] to develop and refine a process map for referrals made for primary care. Process mapping was an iterative process with regular input from the navigators and other members of the patient navigation workgroup, as well as input from case managers and social workers when needed.
Process
Upon receiving a referral, navigators made contact with the patient within 1 business day and obtained preferred contact information. The navigator completed a patient intake form and needs assessment. Each patient referral was logged into a secure database. Most referrals were generated by our specialty health care providers, but as awareness of the program grew referrals also came from the community-based organizations as well as self-referrals from patients or caregivers. Most of the referrals (68%) were specifically for assistance in finding a primary care medical home. Other reasons patients were referred to the navigator program included needing assistance with housing, financial assistance, or insurance application questions.
Barriers Addressed
Patient navigators spent much of their time proactively seeking local sources of adult primary care for clients and in doing so established a network of primary care offices in the community that would be able and willing to accept new patients with SCD. This was accomplished through personal outreach and communication with stakeholders at the academic medical center and in the community, utilizing skills learned during patient navigation training and by sorting through vast informational resources available to the public. When feasible the navigators, accompanied by the project director and adult hematology specialist, personally visited sites of primary care in the community to help provide information about the CSCCN and establish a working relationship.
Our navigators would make calls together with the patient to make a PCP appointment and would remind them of upcoming PCP appointments. In some cases, navigators would attend appointments with the patient; in addition, they would help advocate for them when they had to go to the emergency department. If a patient missed a PCP appointment, the navigator followed up to find out why and how to secure another appointment. Navigators would follow-up every 10 days if a patient had not yet seen a PCP. As many of our patients did not understand why they needed to have a PCP when they had a specialist, the navigators educated patients on the importance of PCP care.
In additon, navigators helped our patients deal with insurance coverage problems, such as frequent insurance changes/insurance getting dropped. Some patients had low literacy or had difficulties in filling out disability or insurance forms properly. Navigators received training from state coordinators for Medicaid and SSI disability on filling out the respective forms, which can be confusing.
Our navigators were trained in motivational interviewing and used it to identify other barriers patients were facing. In trying to obtain proper care, our patients struggled with competing priorities (eg, food, shelter, child care). Because of the numerous challenges that our patients and families face, an important role for the patients navigators was creating a bridge to accessing social and community resources.
Outcomes
The help and support provided by the navigators is helpful in mitigating the mistrust our patients have about the health care system, in part due to unfavorable initial experiences as young adults or being stereotyped for pain issues. Our patients have said that navigators make them feel like they have an advocate—someone who is on their side.
Subsequent to forming the initial navigator group, we expanded our program by adding 2 patient navigators in Colorado Springs, a smaller metropolitan area about an hour and a half south of Denver. In Colorado Springs, 16 referrals for services have been made but none of these referrals were specifically for a PCP, since access to a PCP was not a barrier to care in that locale. Patients were more likely to need help with things such as transportation to get to their location of specialty care.
Conclusion
Coordination of care is essential for individuals with chronic diseases. While the focus to date has been on coordination of care for common chronic illness such as diabetes, it is essential to use best practices for individuals with less common, but often more complex, chronic diseases such as SCD. To facilitate coordination of care for this population who receive specialty care in an academic medical center, we developed a patient navigation program for adults with SCD as a quality improvement project. Our navigation program assisted 62% of referred adults in the Denver metropolitan area in identifying a PCP and attending an initial appointment.
The program is continuing for the duration of the grant funding and at this time we will likely need to seek mechanisms for additional support to continue the work that has been started, as well as to consider measurement of outcomes that are meaningful to the institutions in which the program is housed in order to become more sustainable internally.
Patient navigation is an acceptable and feasible way to enhance the care for adults with SCD and can help to bridge systems of clinical care, support and resources. Our program can serve as a model for similar patient populations with orphan chronic diseases that have both primary care and subspecialty needs that have both distinct and overlapping roles. Sustainability is a crucial issue to address and the use of outcome measures that can accurately reflect both successes and challenges of program implementation will be important to share with institutional leaders.
Corresponding author: Linda S. Overholser, MD, MPH, 12631 E 17th Ave., Mail Stop B180, Academic Office 1, Aurora, CO 80045, [email protected].
1. Prabhakar H, Haywood C Jr, Molokie R. Sickle cell disease in the United States: looking back and forward at 100 years of progress in management and survival. Am J Hematol 2010;85:346–53.
2. Quinn CT, Rogers ZR, McCavit TL, Buchanan GR. Improved survival of children and adolescents with sickle cell disease. Blood 2010;115:3447–52.
3. Hemker BG, Brousseau DC, Yan K, et al. When children with sickle-cell disease become adults: lack of outpatient care leads to increased use of the emergency department. Am J Hematol 2011;86:863–5.
4. Freeman HP, Muth BJ, Kerner JF. Expanding access to cancer screening and clinical follow-up among the medically underserved. Cancer Pract 1995 3:19–30.
5. Freeman HP, Rodriguez RL. History and principles of patient navigation. Cancer 2011;117(15 Suppl):3539–42.
6. Natale-Pereira A, Enard KR, Nevarez L, Jones LA. The role of patient navigators in eliminating health disparities. Cancer 2011;117(15 Suppl):3543–52.
7. Dohan D, Schrag D. Using navigators to improve care of underserved patients: current practices and approaches. Cancer 2005;104:848–55.
8. Chin MH, Clarke AR, Nocon RS, et al. A roadmap and best practices for organizations to reduce racial and ethnic disparities in health care. J Gen Intern Med 2012;27:992–1000.
9. Grosse SD, Schechter MS, Kulkarni R, et al. Models of comprehensive multidisciplinary care for individuals in the United States with genetic disorders. Pediatrics 2009;123:407–12.
10. Oyeku SO, Wang CJ, Scoville R, et al. Hemoglobinopathy Learning Collaborative: using quality improvement (QI) to achieve equity in health care quality, coordination, and outcomes for sickle cell disease. J Health Care Poor Underserved 2012;23(3 Suppl):34–48.
11. Harold P. Freeman Patient Navigation Institute. Available at www.hpfreemanpni.org.
12. Patient Navigator Training Collaborative. Available at www.patientnavigatortraining.org.
From the Colorado Sickle Cell Network, University of Colorado School of Medicine, Aurora, CO.
This article is the fifth in our Hemoglobinopathy Learning Collaborative series. See the related editorial by Oyeku et al in the February 2014 issue of JCOM. (—Ed.)
Abstract
- Objective: To describe the development and implementation of a patient navigation program to help individuals with sickle cell disease (SCD) overcome barriers to finding adult primary care.
- Methods: Six patient navigators were recruited and received training. A workgroup was formed to clarify goals and objectives and develop standard procedures. Navigators were instrumental in establishing a network of primary care offices that were willing to accept new patients with SCD. Navigators assisted patients in making calls to primary care offices and in some cases would attend appointments with them.
- Results: About two-thirds of patients who were referred to the navigator program for primary care follow-up attended an initial appointment with a new primary care provider.
- Conclusion: Patient navigation is a feasible and useful strategy to help individuals with SCD overcome barriers to receiving comprehensive care.
With advances in the management of sickle cell disease (SCD), adults with SCD are living longer [1,2]. Adequate care for individuals with SCD requires that they receive both specialized services and comprehensive primary care. A lack of comprehensive outpatient care can translate into suboptimal outcomes and increased reliance on the emergency room [3].
In the metropolitan area of Denver, specialty care for individuals with SCD is centralized and easily accessible at a tertiary academic medical center. However, we found that many adult patients treated in our specialty setting had not established care with an adult primary care provider (PCP) or had not been seen regularly by their PCP for ongoing preventive primary care services. Thus, they were not getting their comprehensive care needs met. Although support was available from community-based organizations to help them access certain resources (eg, directions to the food bank), patients reported difficulties in accessing the adult care health system, for example, securing appointments with PCPs and securing/maintaining insurance. No services existed to specifically help them navigate through the complexities of obtaining needed care.
Patient navigation is a strategy commonly used in cancer care settings [4–7] to to help patients overcome barriers in accessing the health care system. Patient navigators can not only facilitate improved health care access and quality for underserved populations through advocacy and care coordination, but they can also address the information needs of patients and assist in overcoming language and cultural barriers. Navigation has been proposed as a strategy to help reduce health disparities [8].
We developed a patient navigation program to address unmet needs of children and adults with SCD receving care in our clinics. In this paper we describe our program.
Patient Navigator Program
Setting
The SCD Treatment Demonstration Program was created in 2004 by the federal government to improve care and outcomes for persons with SCD [9]. As a grantee of this program, we developed the Colorado Sickle Cell Care Network (CSCCN) to care for scd patients in the Denver metropolitan and surrounding area. The CSCCN is a collaboration between the Colorado Sickle Cell Treatment and Research Center and the Division of General Internal Medicine and Department of Hematology at the University of Colorado Denver Anschutz Medical Campus, the Center for Cancer and Blood Disorders at Children’s Hospital Colorado, and 2 community-based organizations. With other grantees, we are participating in the Hemoglobinopathy Learning Collaborative, a collaborative of teams utilizing iterative cycles of testing to learn what changes can be made to improve care processes [10].
Navigators
We developed the patient navigator program to help patients overcome barriers to receiving comprehensive care in a primary care medical home. We hired 4 patient navigators to serve individuals living in or seeking resources in the Denver metropolitan area. Persons interested in being navigators were required to first qualify to be official hospital volunteers at the University of Colorado Hospital and Children’s Hospital Colorado, a process that involved attending an orientation and obtaining official facility badging. They received patient navigation training at the Harold P. Freeman Patient Navigation Institute in New York [11] as well as completed the Colorado Patient Navigator Training Program [12]. Navigators in training learned about the history of patient navigation, health promotion and communication models, motivational interviewing techniques, and systemic and individual barriers to care. All patient navigators received training in HIPAA and went through a volunteer credentialing process at the hospital; however they do not have access to patient’s medical records or the electronic health records.
The navigators are from various backgrounds, and 2 of our patient navigators are bilingual Spanish-English speakers, enhancing our ability to outreach to individuals whose preferred language is Spanish and who may otherwise not be able to access available resources. Some of our patient navigators are family members of individuals being treated for SCD and are able to provide a unique perspective that aids program development.
Once training for the initial group of navigators was completed, a patient navigation workgroup was created to clarify goals and objectives, develop standard procedures, and define navigator responsibilities. This workgroup included the CSCCN program staff, adult and pediatric hematology trained SCD specialists, and the pediatric coordinator. We used the Hemoglobinopathy Learning Collaborative process [10] to develop and refine a process map for referrals made for primary care. Process mapping was an iterative process with regular input from the navigators and other members of the patient navigation workgroup, as well as input from case managers and social workers when needed.
Process
Upon receiving a referral, navigators made contact with the patient within 1 business day and obtained preferred contact information. The navigator completed a patient intake form and needs assessment. Each patient referral was logged into a secure database. Most referrals were generated by our specialty health care providers, but as awareness of the program grew referrals also came from the community-based organizations as well as self-referrals from patients or caregivers. Most of the referrals (68%) were specifically for assistance in finding a primary care medical home. Other reasons patients were referred to the navigator program included needing assistance with housing, financial assistance, or insurance application questions.
Barriers Addressed
Patient navigators spent much of their time proactively seeking local sources of adult primary care for clients and in doing so established a network of primary care offices in the community that would be able and willing to accept new patients with SCD. This was accomplished through personal outreach and communication with stakeholders at the academic medical center and in the community, utilizing skills learned during patient navigation training and by sorting through vast informational resources available to the public. When feasible the navigators, accompanied by the project director and adult hematology specialist, personally visited sites of primary care in the community to help provide information about the CSCCN and establish a working relationship.
Our navigators would make calls together with the patient to make a PCP appointment and would remind them of upcoming PCP appointments. In some cases, navigators would attend appointments with the patient; in addition, they would help advocate for them when they had to go to the emergency department. If a patient missed a PCP appointment, the navigator followed up to find out why and how to secure another appointment. Navigators would follow-up every 10 days if a patient had not yet seen a PCP. As many of our patients did not understand why they needed to have a PCP when they had a specialist, the navigators educated patients on the importance of PCP care.
In additon, navigators helped our patients deal with insurance coverage problems, such as frequent insurance changes/insurance getting dropped. Some patients had low literacy or had difficulties in filling out disability or insurance forms properly. Navigators received training from state coordinators for Medicaid and SSI disability on filling out the respective forms, which can be confusing.
Our navigators were trained in motivational interviewing and used it to identify other barriers patients were facing. In trying to obtain proper care, our patients struggled with competing priorities (eg, food, shelter, child care). Because of the numerous challenges that our patients and families face, an important role for the patients navigators was creating a bridge to accessing social and community resources.
Outcomes
The help and support provided by the navigators is helpful in mitigating the mistrust our patients have about the health care system, in part due to unfavorable initial experiences as young adults or being stereotyped for pain issues. Our patients have said that navigators make them feel like they have an advocate—someone who is on their side.
Subsequent to forming the initial navigator group, we expanded our program by adding 2 patient navigators in Colorado Springs, a smaller metropolitan area about an hour and a half south of Denver. In Colorado Springs, 16 referrals for services have been made but none of these referrals were specifically for a PCP, since access to a PCP was not a barrier to care in that locale. Patients were more likely to need help with things such as transportation to get to their location of specialty care.
Conclusion
Coordination of care is essential for individuals with chronic diseases. While the focus to date has been on coordination of care for common chronic illness such as diabetes, it is essential to use best practices for individuals with less common, but often more complex, chronic diseases such as SCD. To facilitate coordination of care for this population who receive specialty care in an academic medical center, we developed a patient navigation program for adults with SCD as a quality improvement project. Our navigation program assisted 62% of referred adults in the Denver metropolitan area in identifying a PCP and attending an initial appointment.
The program is continuing for the duration of the grant funding and at this time we will likely need to seek mechanisms for additional support to continue the work that has been started, as well as to consider measurement of outcomes that are meaningful to the institutions in which the program is housed in order to become more sustainable internally.
Patient navigation is an acceptable and feasible way to enhance the care for adults with SCD and can help to bridge systems of clinical care, support and resources. Our program can serve as a model for similar patient populations with orphan chronic diseases that have both primary care and subspecialty needs that have both distinct and overlapping roles. Sustainability is a crucial issue to address and the use of outcome measures that can accurately reflect both successes and challenges of program implementation will be important to share with institutional leaders.
Corresponding author: Linda S. Overholser, MD, MPH, 12631 E 17th Ave., Mail Stop B180, Academic Office 1, Aurora, CO 80045, [email protected].
From the Colorado Sickle Cell Network, University of Colorado School of Medicine, Aurora, CO.
This article is the fifth in our Hemoglobinopathy Learning Collaborative series. See the related editorial by Oyeku et al in the February 2014 issue of JCOM. (—Ed.)
Abstract
- Objective: To describe the development and implementation of a patient navigation program to help individuals with sickle cell disease (SCD) overcome barriers to finding adult primary care.
- Methods: Six patient navigators were recruited and received training. A workgroup was formed to clarify goals and objectives and develop standard procedures. Navigators were instrumental in establishing a network of primary care offices that were willing to accept new patients with SCD. Navigators assisted patients in making calls to primary care offices and in some cases would attend appointments with them.
- Results: About two-thirds of patients who were referred to the navigator program for primary care follow-up attended an initial appointment with a new primary care provider.
- Conclusion: Patient navigation is a feasible and useful strategy to help individuals with SCD overcome barriers to receiving comprehensive care.
With advances in the management of sickle cell disease (SCD), adults with SCD are living longer [1,2]. Adequate care for individuals with SCD requires that they receive both specialized services and comprehensive primary care. A lack of comprehensive outpatient care can translate into suboptimal outcomes and increased reliance on the emergency room [3].
In the metropolitan area of Denver, specialty care for individuals with SCD is centralized and easily accessible at a tertiary academic medical center. However, we found that many adult patients treated in our specialty setting had not established care with an adult primary care provider (PCP) or had not been seen regularly by their PCP for ongoing preventive primary care services. Thus, they were not getting their comprehensive care needs met. Although support was available from community-based organizations to help them access certain resources (eg, directions to the food bank), patients reported difficulties in accessing the adult care health system, for example, securing appointments with PCPs and securing/maintaining insurance. No services existed to specifically help them navigate through the complexities of obtaining needed care.
Patient navigation is a strategy commonly used in cancer care settings [4–7] to to help patients overcome barriers in accessing the health care system. Patient navigators can not only facilitate improved health care access and quality for underserved populations through advocacy and care coordination, but they can also address the information needs of patients and assist in overcoming language and cultural barriers. Navigation has been proposed as a strategy to help reduce health disparities [8].
We developed a patient navigation program to address unmet needs of children and adults with SCD receving care in our clinics. In this paper we describe our program.
Patient Navigator Program
Setting
The SCD Treatment Demonstration Program was created in 2004 by the federal government to improve care and outcomes for persons with SCD [9]. As a grantee of this program, we developed the Colorado Sickle Cell Care Network (CSCCN) to care for scd patients in the Denver metropolitan and surrounding area. The CSCCN is a collaboration between the Colorado Sickle Cell Treatment and Research Center and the Division of General Internal Medicine and Department of Hematology at the University of Colorado Denver Anschutz Medical Campus, the Center for Cancer and Blood Disorders at Children’s Hospital Colorado, and 2 community-based organizations. With other grantees, we are participating in the Hemoglobinopathy Learning Collaborative, a collaborative of teams utilizing iterative cycles of testing to learn what changes can be made to improve care processes [10].
Navigators
We developed the patient navigator program to help patients overcome barriers to receiving comprehensive care in a primary care medical home. We hired 4 patient navigators to serve individuals living in or seeking resources in the Denver metropolitan area. Persons interested in being navigators were required to first qualify to be official hospital volunteers at the University of Colorado Hospital and Children’s Hospital Colorado, a process that involved attending an orientation and obtaining official facility badging. They received patient navigation training at the Harold P. Freeman Patient Navigation Institute in New York [11] as well as completed the Colorado Patient Navigator Training Program [12]. Navigators in training learned about the history of patient navigation, health promotion and communication models, motivational interviewing techniques, and systemic and individual barriers to care. All patient navigators received training in HIPAA and went through a volunteer credentialing process at the hospital; however they do not have access to patient’s medical records or the electronic health records.
The navigators are from various backgrounds, and 2 of our patient navigators are bilingual Spanish-English speakers, enhancing our ability to outreach to individuals whose preferred language is Spanish and who may otherwise not be able to access available resources. Some of our patient navigators are family members of individuals being treated for SCD and are able to provide a unique perspective that aids program development.
Once training for the initial group of navigators was completed, a patient navigation workgroup was created to clarify goals and objectives, develop standard procedures, and define navigator responsibilities. This workgroup included the CSCCN program staff, adult and pediatric hematology trained SCD specialists, and the pediatric coordinator. We used the Hemoglobinopathy Learning Collaborative process [10] to develop and refine a process map for referrals made for primary care. Process mapping was an iterative process with regular input from the navigators and other members of the patient navigation workgroup, as well as input from case managers and social workers when needed.
Process
Upon receiving a referral, navigators made contact with the patient within 1 business day and obtained preferred contact information. The navigator completed a patient intake form and needs assessment. Each patient referral was logged into a secure database. Most referrals were generated by our specialty health care providers, but as awareness of the program grew referrals also came from the community-based organizations as well as self-referrals from patients or caregivers. Most of the referrals (68%) were specifically for assistance in finding a primary care medical home. Other reasons patients were referred to the navigator program included needing assistance with housing, financial assistance, or insurance application questions.
Barriers Addressed
Patient navigators spent much of their time proactively seeking local sources of adult primary care for clients and in doing so established a network of primary care offices in the community that would be able and willing to accept new patients with SCD. This was accomplished through personal outreach and communication with stakeholders at the academic medical center and in the community, utilizing skills learned during patient navigation training and by sorting through vast informational resources available to the public. When feasible the navigators, accompanied by the project director and adult hematology specialist, personally visited sites of primary care in the community to help provide information about the CSCCN and establish a working relationship.
Our navigators would make calls together with the patient to make a PCP appointment and would remind them of upcoming PCP appointments. In some cases, navigators would attend appointments with the patient; in addition, they would help advocate for them when they had to go to the emergency department. If a patient missed a PCP appointment, the navigator followed up to find out why and how to secure another appointment. Navigators would follow-up every 10 days if a patient had not yet seen a PCP. As many of our patients did not understand why they needed to have a PCP when they had a specialist, the navigators educated patients on the importance of PCP care.
In additon, navigators helped our patients deal with insurance coverage problems, such as frequent insurance changes/insurance getting dropped. Some patients had low literacy or had difficulties in filling out disability or insurance forms properly. Navigators received training from state coordinators for Medicaid and SSI disability on filling out the respective forms, which can be confusing.
Our navigators were trained in motivational interviewing and used it to identify other barriers patients were facing. In trying to obtain proper care, our patients struggled with competing priorities (eg, food, shelter, child care). Because of the numerous challenges that our patients and families face, an important role for the patients navigators was creating a bridge to accessing social and community resources.
Outcomes
The help and support provided by the navigators is helpful in mitigating the mistrust our patients have about the health care system, in part due to unfavorable initial experiences as young adults or being stereotyped for pain issues. Our patients have said that navigators make them feel like they have an advocate—someone who is on their side.
Subsequent to forming the initial navigator group, we expanded our program by adding 2 patient navigators in Colorado Springs, a smaller metropolitan area about an hour and a half south of Denver. In Colorado Springs, 16 referrals for services have been made but none of these referrals were specifically for a PCP, since access to a PCP was not a barrier to care in that locale. Patients were more likely to need help with things such as transportation to get to their location of specialty care.
Conclusion
Coordination of care is essential for individuals with chronic diseases. While the focus to date has been on coordination of care for common chronic illness such as diabetes, it is essential to use best practices for individuals with less common, but often more complex, chronic diseases such as SCD. To facilitate coordination of care for this population who receive specialty care in an academic medical center, we developed a patient navigation program for adults with SCD as a quality improvement project. Our navigation program assisted 62% of referred adults in the Denver metropolitan area in identifying a PCP and attending an initial appointment.
The program is continuing for the duration of the grant funding and at this time we will likely need to seek mechanisms for additional support to continue the work that has been started, as well as to consider measurement of outcomes that are meaningful to the institutions in which the program is housed in order to become more sustainable internally.
Patient navigation is an acceptable and feasible way to enhance the care for adults with SCD and can help to bridge systems of clinical care, support and resources. Our program can serve as a model for similar patient populations with orphan chronic diseases that have both primary care and subspecialty needs that have both distinct and overlapping roles. Sustainability is a crucial issue to address and the use of outcome measures that can accurately reflect both successes and challenges of program implementation will be important to share with institutional leaders.
Corresponding author: Linda S. Overholser, MD, MPH, 12631 E 17th Ave., Mail Stop B180, Academic Office 1, Aurora, CO 80045, [email protected].
1. Prabhakar H, Haywood C Jr, Molokie R. Sickle cell disease in the United States: looking back and forward at 100 years of progress in management and survival. Am J Hematol 2010;85:346–53.
2. Quinn CT, Rogers ZR, McCavit TL, Buchanan GR. Improved survival of children and adolescents with sickle cell disease. Blood 2010;115:3447–52.
3. Hemker BG, Brousseau DC, Yan K, et al. When children with sickle-cell disease become adults: lack of outpatient care leads to increased use of the emergency department. Am J Hematol 2011;86:863–5.
4. Freeman HP, Muth BJ, Kerner JF. Expanding access to cancer screening and clinical follow-up among the medically underserved. Cancer Pract 1995 3:19–30.
5. Freeman HP, Rodriguez RL. History and principles of patient navigation. Cancer 2011;117(15 Suppl):3539–42.
6. Natale-Pereira A, Enard KR, Nevarez L, Jones LA. The role of patient navigators in eliminating health disparities. Cancer 2011;117(15 Suppl):3543–52.
7. Dohan D, Schrag D. Using navigators to improve care of underserved patients: current practices and approaches. Cancer 2005;104:848–55.
8. Chin MH, Clarke AR, Nocon RS, et al. A roadmap and best practices for organizations to reduce racial and ethnic disparities in health care. J Gen Intern Med 2012;27:992–1000.
9. Grosse SD, Schechter MS, Kulkarni R, et al. Models of comprehensive multidisciplinary care for individuals in the United States with genetic disorders. Pediatrics 2009;123:407–12.
10. Oyeku SO, Wang CJ, Scoville R, et al. Hemoglobinopathy Learning Collaborative: using quality improvement (QI) to achieve equity in health care quality, coordination, and outcomes for sickle cell disease. J Health Care Poor Underserved 2012;23(3 Suppl):34–48.
11. Harold P. Freeman Patient Navigation Institute. Available at www.hpfreemanpni.org.
12. Patient Navigator Training Collaborative. Available at www.patientnavigatortraining.org.
1. Prabhakar H, Haywood C Jr, Molokie R. Sickle cell disease in the United States: looking back and forward at 100 years of progress in management and survival. Am J Hematol 2010;85:346–53.
2. Quinn CT, Rogers ZR, McCavit TL, Buchanan GR. Improved survival of children and adolescents with sickle cell disease. Blood 2010;115:3447–52.
3. Hemker BG, Brousseau DC, Yan K, et al. When children with sickle-cell disease become adults: lack of outpatient care leads to increased use of the emergency department. Am J Hematol 2011;86:863–5.
4. Freeman HP, Muth BJ, Kerner JF. Expanding access to cancer screening and clinical follow-up among the medically underserved. Cancer Pract 1995 3:19–30.
5. Freeman HP, Rodriguez RL. History and principles of patient navigation. Cancer 2011;117(15 Suppl):3539–42.
6. Natale-Pereira A, Enard KR, Nevarez L, Jones LA. The role of patient navigators in eliminating health disparities. Cancer 2011;117(15 Suppl):3543–52.
7. Dohan D, Schrag D. Using navigators to improve care of underserved patients: current practices and approaches. Cancer 2005;104:848–55.
8. Chin MH, Clarke AR, Nocon RS, et al. A roadmap and best practices for organizations to reduce racial and ethnic disparities in health care. J Gen Intern Med 2012;27:992–1000.
9. Grosse SD, Schechter MS, Kulkarni R, et al. Models of comprehensive multidisciplinary care for individuals in the United States with genetic disorders. Pediatrics 2009;123:407–12.
10. Oyeku SO, Wang CJ, Scoville R, et al. Hemoglobinopathy Learning Collaborative: using quality improvement (QI) to achieve equity in health care quality, coordination, and outcomes for sickle cell disease. J Health Care Poor Underserved 2012;23(3 Suppl):34–48.
11. Harold P. Freeman Patient Navigation Institute. Available at www.hpfreemanpni.org.
12. Patient Navigator Training Collaborative. Available at www.patientnavigatortraining.org.
Cutaneous Signs of Piety
Religious practices can lead to cutaneous changes, and awareness of these changes is of paramount importance in establishing the cause. We review the cutaneous changes related to religious practices, including the Semitic religions, Hinduism, and Sikhism (Table). The most widely followed Semitic religions are Christianity, Islam, and Judaism. Christianity and Islam collectively account for more than half of the world’s population.1
Christianity
Christian individuals are prone to blisters that develop below the knees due to repeated kneeling in prayer.2 A case of allergic contact dermatitis to a wooden cross made from Dalbergia nigra has been reported.3 Localized swelling with hypertrichosis due to muscular hypertrophy in the lower neck above the interscapular region has been described in well-built men who lift weights to bear pasos (floats with wooden sculptures) during Holy Week in Seville, Spain.4
Islam
Cutaneous signs of piety have been well documented in Muslim individuals. The most common presentation is hyperpigmentation of the forehead, usually noted as a secondary finding in patients seeking treatment of unrelated symptoms.5 Cutaneous changes in this region correspond with the area of the forehead that rests on the carpet during prayer. Macules typically present on the upper central aspect of the forehead close to the hairline and/or in pairs above the medial ends of the eyebrows; sometimes 3 or 4 lesions may be present in this area with involvement of the nasion (Figure 1).6
In Saudi Arabia where Sunni Islam predominates, Muslim individuals observe prayer 5 times per day. Calluses have been observed in areas of the body that are frequently subject to friction during this practice.7 For instance, calluses are more prominent on the right knee (Figure 2) and the left ankle, which bear the individual’s weight during prayer, and typically become nodular over time (Figure 3). In Arabic, these calluses are referred to as zabiba.8
A notable finding in followers of Shia Islam, which predominates in Iran, is the development of small nodules on the forehead, possibly caused by rubbing the forehead on a flat disclike prayer stone called a mohr during daily prayer,9 which is said to enhance public esteem.10 The nodules generally are asymptomatic, but some individuals experience minimal pain on pressure.8 Ulceration of the nodules has rarely been observed.7
Limited access to thick and soft carpets and rarely bony exostoses or obesity are factors associated with prayer that can lead to skin changes (known as prayer signs), as they render the skin sensitive to pressure. Localized alopecia may occur on the forehead in individuals with low or pointed hairlines. An unexplained finding noted by one of the authors (K.A.) in some elderly Muslim individuals is that hair located on the forehead at the point of pressure during prayer remains pigmented, while the rest of the hair on the scalp turns white. Hyperpigmentation of the knuckles may be seen in individuals who use closed fists to rise from the ground following prayer. Except for mild hyperpigmentation of the knees,7 Muslim women rarely develop these changes, as they either do not pray,10 particularly during menstruation or puerperium, or they have more subcutaneous fat for protection.7 Some Muslim individuals who pray regularly at home may be conscious of these skin changes and therefore use a soft pillow to rest the forehead during prayer.
The histopathologic findings of prayer signs depend on the extent of lichenification and typically show compact hyperkeratosis or orthokeratosis, hypergranulosis, acanthosis, and mild dermal inflammation.8 Increased dermal vascularization and papillary fibrosis unlike that seen in lichen simplex chronicus have been described from skin changes in the lower limbs due to prayer practices.7 Additional findings in forehead biopsies include multiple comedones and epidermoid cysts in elderly patients showing a foreign body granulomatous reaction to hair fragments.10 Deposition of mucinous material in the dermal collagen in a prayer nodule on the forehead has been described in a Shiite individual, possibly due to repetitive microtrauma from the use of a prayer stone.9 Infections developed from sharing communal facilities or performing ritual sacrifices (eg, tinea,11 orf12) are prevalent during the yearly Hajj pilgrimage at Makkah, Saudi Arabia, in addition to other infectious and noninfectious dermatoses.13 Muslim women wearing headscarves secured at the neck with a safety pin have developed vitiligo at that site due to friction.14 Occasionally, Muslim individuals may apply perfumes before prayers, which may cause allergic contact dermatitis.
Judaism
Hyperpigmentation has been described in Jewish men at Talmudic seminaries due to the practice of reciting scriptures, which involves a rocking motion known as daven that leads to friction on the back.15 Lesions associated with this practice typically appear as isolated macules or a continuous linear patch over the skin of the bony protuberances of the inferior thoracic and lumbar vertebrae. Allergic contact dermatitis has been reported in Jewish individuals due to exposure to a variety of agents during religious practices, such as potassium dichromate, which is present in the leather used to make phylacteries or tefillin (boxes containing scripture that are secured to the forehead with straps that are then tied to the left arm during prayer). This finding has been noted in some or all areas of contact including the forehead, scalp, neck, left wrist, and waist.16
It is customary for both Orthodox Jewish and Muslim women to be concealed by clothing, which predisposes them to vitamin D deficiency17,18 but also protects them from developing malignant melanoma.19 Neonates have developed genital herpetic infections following circumcision due to the ancient practice of having the mohel (the person who performs the Jewish circumcision) suck on the wound until the bleeding stops.20
Hinduism
Hinduism espouses an eclectic philosophy of life subsuming numerous beliefs involving guardian deities, invoked by sacred marks, symbols, and rituals. Marks generally are placed on the forehead or other specified sites on the body. Sandalwood paste as well as vibhuti and kumkum powders most commonly are used, which can cause allergic contact dermatitis. Vibhuti is holy ash prepared by burning balls of dried cow dung in a fire pit with rice husk and clarified butter. Kumkum is prepared by alkalinizing turmeric powder, which turns red in color. A case of contact allergic dermatitis was reported in a Hindu priest who regularly used sandalwood paste on the forehead and as a balm for an ailment of the hands and feet.21 In our experience, vibhuti also has caused dermatitis on the forehead as well as on the neck and arms. The main difference between the 2 eruptions is that sandalwood dermatitis generally is localized to the center of the forehead as a circular or vertical mark or often in the center of the left palm, which is used to mix sandalwood powder with water to make a paste (Figure 4), while vibhuti contact dermatitis typically presents as a broad horizontal patch on the forehead because the powder is smeared with the middle 3 fingers (Figure 5). Perfumes used by some Muslim individuals before prayer that are applied on the clothes can mimic this type of contact dermatitis, but eruptions typically are confined to the fingers and palms.22 Contact dermatitis caused by necklaces made with beads of the stem of the Ocimum sanctum (holy basil) plant and seeds of the evergreen tree Elaeocarpus ganitrus have been reported.23 Calluses are sometimes seen in individuals who meditate for long hours while sitting in a cross-legged position and usually occur on or uncommonly below the lateral malleolus of the right foot, similar to practitioners of yoga.24
Hemorrhaging and crusting below the lateral malleolus of the right foot have been reported in Buddhist monks due to sitting in a cross-legged position for prolonged periods of meditation.25 Hyperpigmentation of the knees, ankles, and interphalangeal joints of the feet has been seen after sitting in the traditional Japanese meditative position.26 Tattoos of Hindu gods are common, while tattoos are forbidden in Islam and Judaism. Attributes of prominent deities branded on the body may be seen. Discrete sarcoidlike nodules along the axillae and chest wall have been attributed to a Hindu ritual (kavadi) that is performed annually as a form of self-inflicted punishment for their sins in which devotees pierce the chest wall with spokes to form a base over a heavy cage in which offerings are carried, and skewers passed through the cheeks have resulted in similar nodules in the oral cavity.27,28 Consumption of cow’s urine during rituals may induce acute urticaria.29 Lichen planus of the trunk30 and leukoderma of the waist31 may be induced by köbnerization or contact allergy from wearing sacred threads, respectively.
Sikhism
Sikhism, a religion founded in the 15th century, epitomizes the high-water mark of the syncretism between Hinduism and Islam. Men must abstain from cutting their hair; pulling and knotting the hair to maintain a coiffure can cause traction alopecia in the submandibular region and the frontal and parietal areas of the scalp as well as ridging and furrowing of the scalp resembling cutis verticis gyrata. Fixer, a product used to keep the beard intact, can cause contact dermatitis. The tight broad band of cloth (known as a ribbon) that is worn around the head to keep hair intact beneath a turban may cause forehead lesions. Discoid lupus erythematosus–like lesions or painful chondrodermatitis of the pinnae due to pressure from wearing a starched turban have been observed, also called “turban ear” from prominence of both anthelices.32,33 A case of a Sikh man who developed oral sarcoidal lesions from body piercing has been reported.28
Conclusion
Knowledge of the religious practices of patients would help in recognizing puzzling and peculiar dermatoses. It may not be possible to eliminate the causes of these conditions, but methods to reduce their effects on the skin can be discussed with patients.
Acknowledgments—We are grateful to the valuable help rendered by Joginder Kumar, MD, New Delhi, India, and C. Indira, MD, Hyderabad, India.
- The Pew Forum on Religion & Public Life. The Global Religious Landscape: A Report on the Size and Distribution of the World’s Major Religious Groups as of 2010. Washington, DC: The Pew Forum on Religion & Public Life, The Pew Research Center; 2012.
- Goodheart HP. “Devotional dermatoses”: a new nosologic entity? J Am Acad Dermatol. 2001;44:543.
- Fisher AA, Bikowski J. Allergic dermatitis due to a wooden cross made of Dalbergia nigra. Contact Dermatitis. 1981;7:45-46.
- Camacho F. Acquired circumscribed hypertrichosis in the ‘costaleros’ who bear the ‘pasos’ during Holy Week in Seville, Spain. Arch Dermatol. 1995;131:361-363.
- Mishriki YY. Skin commotion from repetitive devotion. prayer callus. Postgrad Med. 1999;105:153-154.
- Barankin B. Prayer marks. Int J Dermatol. 2004;43:985-986.
- Abanmi AA, Al Zouman AY, Al Hussaini H, et al. Prayer marks. Int J Dermatol. 2002;41:411-414.
- Kahana M, Cohen M, Ronnen M, et al. Prayer nodules in Moslem men. Cutis. 1986;38:281-282.
- O’Goshi KI, Aoyama H, Tagami H. Mucin deposition in a prayer nodule on the forehead. Dermatology. 1998;196:364.
- Vollum DI, Azadeh B. Prayer nodules. Clin Exp Dermatol. 1979;4:39-47.
- Arrese JE, Piérard-Franchimont C, Piérard GE. Scytalidium dimidiatum melanonychia and scaly plantar skin in four patients from the Maghreb: imported disease or outbreak in a Belgian mosque? Dermatology. 2001;202:183-185.
- Malik M, Bharier M, Tahan S, et al. Orf acquired during religious observance. Arch Dermatol. 2009;145:606-608.
- Mimesh SA, Al-Khenaizan S, Memish ZA. Dermatologic challenge of pilgrimage. Clin Dermatol. 2008;26:52-61.
- El-Din Anbar T, Abdel-Rahman AT, El-Khayyat MA, et al. Vitiligo on anterior aspect of neck in Muslim females: case series. Int J Dermatol. 2008;47:178-179.
- Naimer SA, Trattner A, Biton A, et al. Davener’s dermatosis: a variant of friction hypermelanosis. J Am Acad Dermatol. 2000;42:442-445.
- Feit NE, Weinberg JM, DeLeo VA. Cutaneous disease and religious practice: case of allergic contact dermatitis to tefillin and review of the literature. Int J Dermatol. 2004;43:886-888.
- Mukamel MN, Weisman Y, Somech R, et al. Vitamin D deficiency and insufficiency in Orthodox and non-Orthodox Jewish mothers in Israel. Isr Med Assoc J. 2001;3:419-421.
- Hatun S, Islam O, Cizmecioglu F, et al. Subclinical vitamin D deficiency is increased in adolescent girls who wear concealing clothing. J Nutr. 2005;135:218-222.
- Vardi G, Modan B, Golan R, et al. Orthodox Jews have a lower incidence of malignant melanoma. a note on the potentially protective role of traditional clothing. Int J Cancer. 1993;53:771-773.
- Gesundheit B, Grisaru-Soen G, Greenberg G, et al. Neonatal genital herpes virus type 1 infection after Jewish ritual circumcision: modern medicine and religious tradition. Pediatrics. 2004;114:e259-e263.
- Pasricha JS, Ramam M. Contact dermatitis due to sandalwood (Santalum album Linn). Indian J Dermatol Venereol Leprol. 1986;52:232-233.
- Carmichael AJ, Foulds IS. Sensitization as a result of a religious ritual. Br J Dermatol. 1990;123:846.
- Bajaj AK, Saraswat A. Contact dermatitis. In: Valia RG, Valia AR, eds. Textbook of Dermatology. 3rd ed. Mumbai, India: Bhalani Publishing House; 2008:545-549.
- Verma SB, Wollina U. Callosities of cross-legged sitting: “yoga sign”—an under-recognized cultural cutaneous presentation. Int J Dermatol. 2008;47:1212-1214.
- Rehman H, Asfour NA. Clinical images: prayer nodules [published online ahead of print November 16, 2009]. CMAJ. 2010;182:e19.
- Ruhnke WG, Serizawa Y. Viral pericarditis. BMJ. 2010;340:b5579.
- Nayar M. Sarcoidosis on ritual scarification. Int J Dermatol. 1993;32:116-118.
- Ng KH, Siar CH, Ganesapillai T. Sarcoid-like foreign body reaction in body piercing: a report of two cases. Oral Surg Oral Med Oral Pathol Radiol Endod. 1997;84:28-31.
- Bhalla M, Thami GP. Acute urticaria following ‘gomutra’ (cow’s urine) gargles. Clin Exp Dermatol. 2005;30:722-723.
- Joshi A, Agarwalla A, Agrawal S, et al. Köbner phenomenon due to sacred thread in lichen planus. J Dermatol. 2000;27:129-130.
- Banerjee K, Banerjee R, Mandal B. Amulet string contact leukoderma and its differentiation from vitiligo. Indian J Dermatol Venereol Leprol. 2004;70:180-181.
- Kanwar AJ, Kaur S. Some dermatoses peculiar to Sikh men. Int J Dermatol. 1990;29:739-740.
- Williams HC. Turban ear. Arch Dermatol. 1994;130:117-119.
Religious practices can lead to cutaneous changes, and awareness of these changes is of paramount importance in establishing the cause. We review the cutaneous changes related to religious practices, including the Semitic religions, Hinduism, and Sikhism (Table). The most widely followed Semitic religions are Christianity, Islam, and Judaism. Christianity and Islam collectively account for more than half of the world’s population.1
Christianity
Christian individuals are prone to blisters that develop below the knees due to repeated kneeling in prayer.2 A case of allergic contact dermatitis to a wooden cross made from Dalbergia nigra has been reported.3 Localized swelling with hypertrichosis due to muscular hypertrophy in the lower neck above the interscapular region has been described in well-built men who lift weights to bear pasos (floats with wooden sculptures) during Holy Week in Seville, Spain.4
Islam
Cutaneous signs of piety have been well documented in Muslim individuals. The most common presentation is hyperpigmentation of the forehead, usually noted as a secondary finding in patients seeking treatment of unrelated symptoms.5 Cutaneous changes in this region correspond with the area of the forehead that rests on the carpet during prayer. Macules typically present on the upper central aspect of the forehead close to the hairline and/or in pairs above the medial ends of the eyebrows; sometimes 3 or 4 lesions may be present in this area with involvement of the nasion (Figure 1).6
In Saudi Arabia where Sunni Islam predominates, Muslim individuals observe prayer 5 times per day. Calluses have been observed in areas of the body that are frequently subject to friction during this practice.7 For instance, calluses are more prominent on the right knee (Figure 2) and the left ankle, which bear the individual’s weight during prayer, and typically become nodular over time (Figure 3). In Arabic, these calluses are referred to as zabiba.8
A notable finding in followers of Shia Islam, which predominates in Iran, is the development of small nodules on the forehead, possibly caused by rubbing the forehead on a flat disclike prayer stone called a mohr during daily prayer,9 which is said to enhance public esteem.10 The nodules generally are asymptomatic, but some individuals experience minimal pain on pressure.8 Ulceration of the nodules has rarely been observed.7
Limited access to thick and soft carpets and rarely bony exostoses or obesity are factors associated with prayer that can lead to skin changes (known as prayer signs), as they render the skin sensitive to pressure. Localized alopecia may occur on the forehead in individuals with low or pointed hairlines. An unexplained finding noted by one of the authors (K.A.) in some elderly Muslim individuals is that hair located on the forehead at the point of pressure during prayer remains pigmented, while the rest of the hair on the scalp turns white. Hyperpigmentation of the knuckles may be seen in individuals who use closed fists to rise from the ground following prayer. Except for mild hyperpigmentation of the knees,7 Muslim women rarely develop these changes, as they either do not pray,10 particularly during menstruation or puerperium, or they have more subcutaneous fat for protection.7 Some Muslim individuals who pray regularly at home may be conscious of these skin changes and therefore use a soft pillow to rest the forehead during prayer.
The histopathologic findings of prayer signs depend on the extent of lichenification and typically show compact hyperkeratosis or orthokeratosis, hypergranulosis, acanthosis, and mild dermal inflammation.8 Increased dermal vascularization and papillary fibrosis unlike that seen in lichen simplex chronicus have been described from skin changes in the lower limbs due to prayer practices.7 Additional findings in forehead biopsies include multiple comedones and epidermoid cysts in elderly patients showing a foreign body granulomatous reaction to hair fragments.10 Deposition of mucinous material in the dermal collagen in a prayer nodule on the forehead has been described in a Shiite individual, possibly due to repetitive microtrauma from the use of a prayer stone.9 Infections developed from sharing communal facilities or performing ritual sacrifices (eg, tinea,11 orf12) are prevalent during the yearly Hajj pilgrimage at Makkah, Saudi Arabia, in addition to other infectious and noninfectious dermatoses.13 Muslim women wearing headscarves secured at the neck with a safety pin have developed vitiligo at that site due to friction.14 Occasionally, Muslim individuals may apply perfumes before prayers, which may cause allergic contact dermatitis.
Judaism
Hyperpigmentation has been described in Jewish men at Talmudic seminaries due to the practice of reciting scriptures, which involves a rocking motion known as daven that leads to friction on the back.15 Lesions associated with this practice typically appear as isolated macules or a continuous linear patch over the skin of the bony protuberances of the inferior thoracic and lumbar vertebrae. Allergic contact dermatitis has been reported in Jewish individuals due to exposure to a variety of agents during religious practices, such as potassium dichromate, which is present in the leather used to make phylacteries or tefillin (boxes containing scripture that are secured to the forehead with straps that are then tied to the left arm during prayer). This finding has been noted in some or all areas of contact including the forehead, scalp, neck, left wrist, and waist.16
It is customary for both Orthodox Jewish and Muslim women to be concealed by clothing, which predisposes them to vitamin D deficiency17,18 but also protects them from developing malignant melanoma.19 Neonates have developed genital herpetic infections following circumcision due to the ancient practice of having the mohel (the person who performs the Jewish circumcision) suck on the wound until the bleeding stops.20
Hinduism
Hinduism espouses an eclectic philosophy of life subsuming numerous beliefs involving guardian deities, invoked by sacred marks, symbols, and rituals. Marks generally are placed on the forehead or other specified sites on the body. Sandalwood paste as well as vibhuti and kumkum powders most commonly are used, which can cause allergic contact dermatitis. Vibhuti is holy ash prepared by burning balls of dried cow dung in a fire pit with rice husk and clarified butter. Kumkum is prepared by alkalinizing turmeric powder, which turns red in color. A case of contact allergic dermatitis was reported in a Hindu priest who regularly used sandalwood paste on the forehead and as a balm for an ailment of the hands and feet.21 In our experience, vibhuti also has caused dermatitis on the forehead as well as on the neck and arms. The main difference between the 2 eruptions is that sandalwood dermatitis generally is localized to the center of the forehead as a circular or vertical mark or often in the center of the left palm, which is used to mix sandalwood powder with water to make a paste (Figure 4), while vibhuti contact dermatitis typically presents as a broad horizontal patch on the forehead because the powder is smeared with the middle 3 fingers (Figure 5). Perfumes used by some Muslim individuals before prayer that are applied on the clothes can mimic this type of contact dermatitis, but eruptions typically are confined to the fingers and palms.22 Contact dermatitis caused by necklaces made with beads of the stem of the Ocimum sanctum (holy basil) plant and seeds of the evergreen tree Elaeocarpus ganitrus have been reported.23 Calluses are sometimes seen in individuals who meditate for long hours while sitting in a cross-legged position and usually occur on or uncommonly below the lateral malleolus of the right foot, similar to practitioners of yoga.24
Hemorrhaging and crusting below the lateral malleolus of the right foot have been reported in Buddhist monks due to sitting in a cross-legged position for prolonged periods of meditation.25 Hyperpigmentation of the knees, ankles, and interphalangeal joints of the feet has been seen after sitting in the traditional Japanese meditative position.26 Tattoos of Hindu gods are common, while tattoos are forbidden in Islam and Judaism. Attributes of prominent deities branded on the body may be seen. Discrete sarcoidlike nodules along the axillae and chest wall have been attributed to a Hindu ritual (kavadi) that is performed annually as a form of self-inflicted punishment for their sins in which devotees pierce the chest wall with spokes to form a base over a heavy cage in which offerings are carried, and skewers passed through the cheeks have resulted in similar nodules in the oral cavity.27,28 Consumption of cow’s urine during rituals may induce acute urticaria.29 Lichen planus of the trunk30 and leukoderma of the waist31 may be induced by köbnerization or contact allergy from wearing sacred threads, respectively.
Sikhism
Sikhism, a religion founded in the 15th century, epitomizes the high-water mark of the syncretism between Hinduism and Islam. Men must abstain from cutting their hair; pulling and knotting the hair to maintain a coiffure can cause traction alopecia in the submandibular region and the frontal and parietal areas of the scalp as well as ridging and furrowing of the scalp resembling cutis verticis gyrata. Fixer, a product used to keep the beard intact, can cause contact dermatitis. The tight broad band of cloth (known as a ribbon) that is worn around the head to keep hair intact beneath a turban may cause forehead lesions. Discoid lupus erythematosus–like lesions or painful chondrodermatitis of the pinnae due to pressure from wearing a starched turban have been observed, also called “turban ear” from prominence of both anthelices.32,33 A case of a Sikh man who developed oral sarcoidal lesions from body piercing has been reported.28
Conclusion
Knowledge of the religious practices of patients would help in recognizing puzzling and peculiar dermatoses. It may not be possible to eliminate the causes of these conditions, but methods to reduce their effects on the skin can be discussed with patients.
Acknowledgments—We are grateful to the valuable help rendered by Joginder Kumar, MD, New Delhi, India, and C. Indira, MD, Hyderabad, India.
Religious practices can lead to cutaneous changes, and awareness of these changes is of paramount importance in establishing the cause. We review the cutaneous changes related to religious practices, including the Semitic religions, Hinduism, and Sikhism (Table). The most widely followed Semitic religions are Christianity, Islam, and Judaism. Christianity and Islam collectively account for more than half of the world’s population.1
Christianity
Christian individuals are prone to blisters that develop below the knees due to repeated kneeling in prayer.2 A case of allergic contact dermatitis to a wooden cross made from Dalbergia nigra has been reported.3 Localized swelling with hypertrichosis due to muscular hypertrophy in the lower neck above the interscapular region has been described in well-built men who lift weights to bear pasos (floats with wooden sculptures) during Holy Week in Seville, Spain.4
Islam
Cutaneous signs of piety have been well documented in Muslim individuals. The most common presentation is hyperpigmentation of the forehead, usually noted as a secondary finding in patients seeking treatment of unrelated symptoms.5 Cutaneous changes in this region correspond with the area of the forehead that rests on the carpet during prayer. Macules typically present on the upper central aspect of the forehead close to the hairline and/or in pairs above the medial ends of the eyebrows; sometimes 3 or 4 lesions may be present in this area with involvement of the nasion (Figure 1).6
In Saudi Arabia where Sunni Islam predominates, Muslim individuals observe prayer 5 times per day. Calluses have been observed in areas of the body that are frequently subject to friction during this practice.7 For instance, calluses are more prominent on the right knee (Figure 2) and the left ankle, which bear the individual’s weight during prayer, and typically become nodular over time (Figure 3). In Arabic, these calluses are referred to as zabiba.8
A notable finding in followers of Shia Islam, which predominates in Iran, is the development of small nodules on the forehead, possibly caused by rubbing the forehead on a flat disclike prayer stone called a mohr during daily prayer,9 which is said to enhance public esteem.10 The nodules generally are asymptomatic, but some individuals experience minimal pain on pressure.8 Ulceration of the nodules has rarely been observed.7
Limited access to thick and soft carpets and rarely bony exostoses or obesity are factors associated with prayer that can lead to skin changes (known as prayer signs), as they render the skin sensitive to pressure. Localized alopecia may occur on the forehead in individuals with low or pointed hairlines. An unexplained finding noted by one of the authors (K.A.) in some elderly Muslim individuals is that hair located on the forehead at the point of pressure during prayer remains pigmented, while the rest of the hair on the scalp turns white. Hyperpigmentation of the knuckles may be seen in individuals who use closed fists to rise from the ground following prayer. Except for mild hyperpigmentation of the knees,7 Muslim women rarely develop these changes, as they either do not pray,10 particularly during menstruation or puerperium, or they have more subcutaneous fat for protection.7 Some Muslim individuals who pray regularly at home may be conscious of these skin changes and therefore use a soft pillow to rest the forehead during prayer.
The histopathologic findings of prayer signs depend on the extent of lichenification and typically show compact hyperkeratosis or orthokeratosis, hypergranulosis, acanthosis, and mild dermal inflammation.8 Increased dermal vascularization and papillary fibrosis unlike that seen in lichen simplex chronicus have been described from skin changes in the lower limbs due to prayer practices.7 Additional findings in forehead biopsies include multiple comedones and epidermoid cysts in elderly patients showing a foreign body granulomatous reaction to hair fragments.10 Deposition of mucinous material in the dermal collagen in a prayer nodule on the forehead has been described in a Shiite individual, possibly due to repetitive microtrauma from the use of a prayer stone.9 Infections developed from sharing communal facilities or performing ritual sacrifices (eg, tinea,11 orf12) are prevalent during the yearly Hajj pilgrimage at Makkah, Saudi Arabia, in addition to other infectious and noninfectious dermatoses.13 Muslim women wearing headscarves secured at the neck with a safety pin have developed vitiligo at that site due to friction.14 Occasionally, Muslim individuals may apply perfumes before prayers, which may cause allergic contact dermatitis.
Judaism
Hyperpigmentation has been described in Jewish men at Talmudic seminaries due to the practice of reciting scriptures, which involves a rocking motion known as daven that leads to friction on the back.15 Lesions associated with this practice typically appear as isolated macules or a continuous linear patch over the skin of the bony protuberances of the inferior thoracic and lumbar vertebrae. Allergic contact dermatitis has been reported in Jewish individuals due to exposure to a variety of agents during religious practices, such as potassium dichromate, which is present in the leather used to make phylacteries or tefillin (boxes containing scripture that are secured to the forehead with straps that are then tied to the left arm during prayer). This finding has been noted in some or all areas of contact including the forehead, scalp, neck, left wrist, and waist.16
It is customary for both Orthodox Jewish and Muslim women to be concealed by clothing, which predisposes them to vitamin D deficiency17,18 but also protects them from developing malignant melanoma.19 Neonates have developed genital herpetic infections following circumcision due to the ancient practice of having the mohel (the person who performs the Jewish circumcision) suck on the wound until the bleeding stops.20
Hinduism
Hinduism espouses an eclectic philosophy of life subsuming numerous beliefs involving guardian deities, invoked by sacred marks, symbols, and rituals. Marks generally are placed on the forehead or other specified sites on the body. Sandalwood paste as well as vibhuti and kumkum powders most commonly are used, which can cause allergic contact dermatitis. Vibhuti is holy ash prepared by burning balls of dried cow dung in a fire pit with rice husk and clarified butter. Kumkum is prepared by alkalinizing turmeric powder, which turns red in color. A case of contact allergic dermatitis was reported in a Hindu priest who regularly used sandalwood paste on the forehead and as a balm for an ailment of the hands and feet.21 In our experience, vibhuti also has caused dermatitis on the forehead as well as on the neck and arms. The main difference between the 2 eruptions is that sandalwood dermatitis generally is localized to the center of the forehead as a circular or vertical mark or often in the center of the left palm, which is used to mix sandalwood powder with water to make a paste (Figure 4), while vibhuti contact dermatitis typically presents as a broad horizontal patch on the forehead because the powder is smeared with the middle 3 fingers (Figure 5). Perfumes used by some Muslim individuals before prayer that are applied on the clothes can mimic this type of contact dermatitis, but eruptions typically are confined to the fingers and palms.22 Contact dermatitis caused by necklaces made with beads of the stem of the Ocimum sanctum (holy basil) plant and seeds of the evergreen tree Elaeocarpus ganitrus have been reported.23 Calluses are sometimes seen in individuals who meditate for long hours while sitting in a cross-legged position and usually occur on or uncommonly below the lateral malleolus of the right foot, similar to practitioners of yoga.24
Hemorrhaging and crusting below the lateral malleolus of the right foot have been reported in Buddhist monks due to sitting in a cross-legged position for prolonged periods of meditation.25 Hyperpigmentation of the knees, ankles, and interphalangeal joints of the feet has been seen after sitting in the traditional Japanese meditative position.26 Tattoos of Hindu gods are common, while tattoos are forbidden in Islam and Judaism. Attributes of prominent deities branded on the body may be seen. Discrete sarcoidlike nodules along the axillae and chest wall have been attributed to a Hindu ritual (kavadi) that is performed annually as a form of self-inflicted punishment for their sins in which devotees pierce the chest wall with spokes to form a base over a heavy cage in which offerings are carried, and skewers passed through the cheeks have resulted in similar nodules in the oral cavity.27,28 Consumption of cow’s urine during rituals may induce acute urticaria.29 Lichen planus of the trunk30 and leukoderma of the waist31 may be induced by köbnerization or contact allergy from wearing sacred threads, respectively.
Sikhism
Sikhism, a religion founded in the 15th century, epitomizes the high-water mark of the syncretism between Hinduism and Islam. Men must abstain from cutting their hair; pulling and knotting the hair to maintain a coiffure can cause traction alopecia in the submandibular region and the frontal and parietal areas of the scalp as well as ridging and furrowing of the scalp resembling cutis verticis gyrata. Fixer, a product used to keep the beard intact, can cause contact dermatitis. The tight broad band of cloth (known as a ribbon) that is worn around the head to keep hair intact beneath a turban may cause forehead lesions. Discoid lupus erythematosus–like lesions or painful chondrodermatitis of the pinnae due to pressure from wearing a starched turban have been observed, also called “turban ear” from prominence of both anthelices.32,33 A case of a Sikh man who developed oral sarcoidal lesions from body piercing has been reported.28
Conclusion
Knowledge of the religious practices of patients would help in recognizing puzzling and peculiar dermatoses. It may not be possible to eliminate the causes of these conditions, but methods to reduce their effects on the skin can be discussed with patients.
Acknowledgments—We are grateful to the valuable help rendered by Joginder Kumar, MD, New Delhi, India, and C. Indira, MD, Hyderabad, India.
- The Pew Forum on Religion & Public Life. The Global Religious Landscape: A Report on the Size and Distribution of the World’s Major Religious Groups as of 2010. Washington, DC: The Pew Forum on Religion & Public Life, The Pew Research Center; 2012.
- Goodheart HP. “Devotional dermatoses”: a new nosologic entity? J Am Acad Dermatol. 2001;44:543.
- Fisher AA, Bikowski J. Allergic dermatitis due to a wooden cross made of Dalbergia nigra. Contact Dermatitis. 1981;7:45-46.
- Camacho F. Acquired circumscribed hypertrichosis in the ‘costaleros’ who bear the ‘pasos’ during Holy Week in Seville, Spain. Arch Dermatol. 1995;131:361-363.
- Mishriki YY. Skin commotion from repetitive devotion. prayer callus. Postgrad Med. 1999;105:153-154.
- Barankin B. Prayer marks. Int J Dermatol. 2004;43:985-986.
- Abanmi AA, Al Zouman AY, Al Hussaini H, et al. Prayer marks. Int J Dermatol. 2002;41:411-414.
- Kahana M, Cohen M, Ronnen M, et al. Prayer nodules in Moslem men. Cutis. 1986;38:281-282.
- O’Goshi KI, Aoyama H, Tagami H. Mucin deposition in a prayer nodule on the forehead. Dermatology. 1998;196:364.
- Vollum DI, Azadeh B. Prayer nodules. Clin Exp Dermatol. 1979;4:39-47.
- Arrese JE, Piérard-Franchimont C, Piérard GE. Scytalidium dimidiatum melanonychia and scaly plantar skin in four patients from the Maghreb: imported disease or outbreak in a Belgian mosque? Dermatology. 2001;202:183-185.
- Malik M, Bharier M, Tahan S, et al. Orf acquired during religious observance. Arch Dermatol. 2009;145:606-608.
- Mimesh SA, Al-Khenaizan S, Memish ZA. Dermatologic challenge of pilgrimage. Clin Dermatol. 2008;26:52-61.
- El-Din Anbar T, Abdel-Rahman AT, El-Khayyat MA, et al. Vitiligo on anterior aspect of neck in Muslim females: case series. Int J Dermatol. 2008;47:178-179.
- Naimer SA, Trattner A, Biton A, et al. Davener’s dermatosis: a variant of friction hypermelanosis. J Am Acad Dermatol. 2000;42:442-445.
- Feit NE, Weinberg JM, DeLeo VA. Cutaneous disease and religious practice: case of allergic contact dermatitis to tefillin and review of the literature. Int J Dermatol. 2004;43:886-888.
- Mukamel MN, Weisman Y, Somech R, et al. Vitamin D deficiency and insufficiency in Orthodox and non-Orthodox Jewish mothers in Israel. Isr Med Assoc J. 2001;3:419-421.
- Hatun S, Islam O, Cizmecioglu F, et al. Subclinical vitamin D deficiency is increased in adolescent girls who wear concealing clothing. J Nutr. 2005;135:218-222.
- Vardi G, Modan B, Golan R, et al. Orthodox Jews have a lower incidence of malignant melanoma. a note on the potentially protective role of traditional clothing. Int J Cancer. 1993;53:771-773.
- Gesundheit B, Grisaru-Soen G, Greenberg G, et al. Neonatal genital herpes virus type 1 infection after Jewish ritual circumcision: modern medicine and religious tradition. Pediatrics. 2004;114:e259-e263.
- Pasricha JS, Ramam M. Contact dermatitis due to sandalwood (Santalum album Linn). Indian J Dermatol Venereol Leprol. 1986;52:232-233.
- Carmichael AJ, Foulds IS. Sensitization as a result of a religious ritual. Br J Dermatol. 1990;123:846.
- Bajaj AK, Saraswat A. Contact dermatitis. In: Valia RG, Valia AR, eds. Textbook of Dermatology. 3rd ed. Mumbai, India: Bhalani Publishing House; 2008:545-549.
- Verma SB, Wollina U. Callosities of cross-legged sitting: “yoga sign”—an under-recognized cultural cutaneous presentation. Int J Dermatol. 2008;47:1212-1214.
- Rehman H, Asfour NA. Clinical images: prayer nodules [published online ahead of print November 16, 2009]. CMAJ. 2010;182:e19.
- Ruhnke WG, Serizawa Y. Viral pericarditis. BMJ. 2010;340:b5579.
- Nayar M. Sarcoidosis on ritual scarification. Int J Dermatol. 1993;32:116-118.
- Ng KH, Siar CH, Ganesapillai T. Sarcoid-like foreign body reaction in body piercing: a report of two cases. Oral Surg Oral Med Oral Pathol Radiol Endod. 1997;84:28-31.
- Bhalla M, Thami GP. Acute urticaria following ‘gomutra’ (cow’s urine) gargles. Clin Exp Dermatol. 2005;30:722-723.
- Joshi A, Agarwalla A, Agrawal S, et al. Köbner phenomenon due to sacred thread in lichen planus. J Dermatol. 2000;27:129-130.
- Banerjee K, Banerjee R, Mandal B. Amulet string contact leukoderma and its differentiation from vitiligo. Indian J Dermatol Venereol Leprol. 2004;70:180-181.
- Kanwar AJ, Kaur S. Some dermatoses peculiar to Sikh men. Int J Dermatol. 1990;29:739-740.
- Williams HC. Turban ear. Arch Dermatol. 1994;130:117-119.
- The Pew Forum on Religion & Public Life. The Global Religious Landscape: A Report on the Size and Distribution of the World’s Major Religious Groups as of 2010. Washington, DC: The Pew Forum on Religion & Public Life, The Pew Research Center; 2012.
- Goodheart HP. “Devotional dermatoses”: a new nosologic entity? J Am Acad Dermatol. 2001;44:543.
- Fisher AA, Bikowski J. Allergic dermatitis due to a wooden cross made of Dalbergia nigra. Contact Dermatitis. 1981;7:45-46.
- Camacho F. Acquired circumscribed hypertrichosis in the ‘costaleros’ who bear the ‘pasos’ during Holy Week in Seville, Spain. Arch Dermatol. 1995;131:361-363.
- Mishriki YY. Skin commotion from repetitive devotion. prayer callus. Postgrad Med. 1999;105:153-154.
- Barankin B. Prayer marks. Int J Dermatol. 2004;43:985-986.
- Abanmi AA, Al Zouman AY, Al Hussaini H, et al. Prayer marks. Int J Dermatol. 2002;41:411-414.
- Kahana M, Cohen M, Ronnen M, et al. Prayer nodules in Moslem men. Cutis. 1986;38:281-282.
- O’Goshi KI, Aoyama H, Tagami H. Mucin deposition in a prayer nodule on the forehead. Dermatology. 1998;196:364.
- Vollum DI, Azadeh B. Prayer nodules. Clin Exp Dermatol. 1979;4:39-47.
- Arrese JE, Piérard-Franchimont C, Piérard GE. Scytalidium dimidiatum melanonychia and scaly plantar skin in four patients from the Maghreb: imported disease or outbreak in a Belgian mosque? Dermatology. 2001;202:183-185.
- Malik M, Bharier M, Tahan S, et al. Orf acquired during religious observance. Arch Dermatol. 2009;145:606-608.
- Mimesh SA, Al-Khenaizan S, Memish ZA. Dermatologic challenge of pilgrimage. Clin Dermatol. 2008;26:52-61.
- El-Din Anbar T, Abdel-Rahman AT, El-Khayyat MA, et al. Vitiligo on anterior aspect of neck in Muslim females: case series. Int J Dermatol. 2008;47:178-179.
- Naimer SA, Trattner A, Biton A, et al. Davener’s dermatosis: a variant of friction hypermelanosis. J Am Acad Dermatol. 2000;42:442-445.
- Feit NE, Weinberg JM, DeLeo VA. Cutaneous disease and religious practice: case of allergic contact dermatitis to tefillin and review of the literature. Int J Dermatol. 2004;43:886-888.
- Mukamel MN, Weisman Y, Somech R, et al. Vitamin D deficiency and insufficiency in Orthodox and non-Orthodox Jewish mothers in Israel. Isr Med Assoc J. 2001;3:419-421.
- Hatun S, Islam O, Cizmecioglu F, et al. Subclinical vitamin D deficiency is increased in adolescent girls who wear concealing clothing. J Nutr. 2005;135:218-222.
- Vardi G, Modan B, Golan R, et al. Orthodox Jews have a lower incidence of malignant melanoma. a note on the potentially protective role of traditional clothing. Int J Cancer. 1993;53:771-773.
- Gesundheit B, Grisaru-Soen G, Greenberg G, et al. Neonatal genital herpes virus type 1 infection after Jewish ritual circumcision: modern medicine and religious tradition. Pediatrics. 2004;114:e259-e263.
- Pasricha JS, Ramam M. Contact dermatitis due to sandalwood (Santalum album Linn). Indian J Dermatol Venereol Leprol. 1986;52:232-233.
- Carmichael AJ, Foulds IS. Sensitization as a result of a religious ritual. Br J Dermatol. 1990;123:846.
- Bajaj AK, Saraswat A. Contact dermatitis. In: Valia RG, Valia AR, eds. Textbook of Dermatology. 3rd ed. Mumbai, India: Bhalani Publishing House; 2008:545-549.
- Verma SB, Wollina U. Callosities of cross-legged sitting: “yoga sign”—an under-recognized cultural cutaneous presentation. Int J Dermatol. 2008;47:1212-1214.
- Rehman H, Asfour NA. Clinical images: prayer nodules [published online ahead of print November 16, 2009]. CMAJ. 2010;182:e19.
- Ruhnke WG, Serizawa Y. Viral pericarditis. BMJ. 2010;340:b5579.
- Nayar M. Sarcoidosis on ritual scarification. Int J Dermatol. 1993;32:116-118.
- Ng KH, Siar CH, Ganesapillai T. Sarcoid-like foreign body reaction in body piercing: a report of two cases. Oral Surg Oral Med Oral Pathol Radiol Endod. 1997;84:28-31.
- Bhalla M, Thami GP. Acute urticaria following ‘gomutra’ (cow’s urine) gargles. Clin Exp Dermatol. 2005;30:722-723.
- Joshi A, Agarwalla A, Agrawal S, et al. Köbner phenomenon due to sacred thread in lichen planus. J Dermatol. 2000;27:129-130.
- Banerjee K, Banerjee R, Mandal B. Amulet string contact leukoderma and its differentiation from vitiligo. Indian J Dermatol Venereol Leprol. 2004;70:180-181.
- Kanwar AJ, Kaur S. Some dermatoses peculiar to Sikh men. Int J Dermatol. 1990;29:739-740.
- Williams HC. Turban ear. Arch Dermatol. 1994;130:117-119.
Practice Points
- Cutaneous changes may be seen in specified areas of the skin following regular worship in almost all major religions of the world.
- Cutaneous lesions are most commonly associated with friction from praying, along with contact allergic dermatitis from products and substances commonly used in worshipping and granulomas due to practices such as tattoos and skin piercing.
- Uncommon skin manifestations include urticaria and leukoderma.
- Some religious practices may render individuals prone to infections that manifest on the skin.
Getting past bad drug outcomes
In my first year of fellowship, I met a delightful old man who had temporal arteritis. We naturally treated him with steroids, but he consequently suffered a vertebral fracture. He passed away soon after that from pneumonia that was probably aggravated by his inability to breathe deeply and cough appropriately.
An elderly patient with rheumatoid arthritis was diagnosed with lymphoma. For want of something to blame, his children blamed it on the methotrexate.
A woman with lupus nephritis got pregnant while on mycophenolate despite being on contraception. Her baby was born with malformed ears and eyes, and by all accounts will probably be deaf and blind.
We have been gifted with this mind-blowing ability to make our patients’ lives much better. That sense of accomplishment can be intoxicating. After all, how many of your polymyalgia rheumatica patients worship you because you made the diagnosis and made them 100% better by putting them on prednisone? Yet we forget that although bad things rarely happen, that does not mean that they won’t happen.
In a beautiful book called "Where’d You Go, Bernadette?" the husband of the title character says that the brain is a discounting mechanism: "Let’s say you get a crack in your windshield and you’re really upset. Oh no, my windshield, it’s ruined, I can hardly see out of it, this is a tragedy! But you don’t have enough money to fix it, so you drive with it. In a month, someone asks you what happened to your windshield, and you say, What do you mean? Because your brain has discounted it. ... It’s for survival. You need to be prepared for novel experiences because often they signal danger."
The book is about an artist who we are led to believe has completed her downward spiral, going from genius to wacko. In the above passage, the artist’s husband is explaining to their daughter why they loved their family home so much, despite its state of extreme disrepair. They loved the house so much that they couldn’t see that it was a safety hazard.
As a fresh graduate I insisted on weaning everyone off prednisone, terrified of the potential side effects. Five years later and with the benefit of the collected wisdom of hundreds of rheumatologists before me, I have accepted that some people need a low dose of steroid to keep their disease quiet. I have used this and other, more toxic drugs to such great effects – taking for granted their ability to make people better – that I forget sometimes that they can cause serious problems.
Bad outcomes can and do happen in spite of our best intentions. In my case, my default is to blame myself. In my more melodramatic moments, I wonder if I deserve to be a doctor. But when I am done feeling angry or sad, or, frankly, feeling sorry for myself, then I need that discounting mechanism to kick in, to remind myself that this is one bad outcome out of many good outcomes. There are things beyond my control, and I cannot let a bad outcome keep me from doing the good work that I am still able to do.
There is a scene from the TV series "The West Wing" where the president asks one of his staffers if he thought the president was being kept from doing a great job because his demons were "shouting down the better angels" in his brain. Thankfully, my brain’s discounting mechanism helps keep the demons at bay.
Dr. Chan practices rheumatology in Pawtucket, R.I.
In my first year of fellowship, I met a delightful old man who had temporal arteritis. We naturally treated him with steroids, but he consequently suffered a vertebral fracture. He passed away soon after that from pneumonia that was probably aggravated by his inability to breathe deeply and cough appropriately.
An elderly patient with rheumatoid arthritis was diagnosed with lymphoma. For want of something to blame, his children blamed it on the methotrexate.
A woman with lupus nephritis got pregnant while on mycophenolate despite being on contraception. Her baby was born with malformed ears and eyes, and by all accounts will probably be deaf and blind.
We have been gifted with this mind-blowing ability to make our patients’ lives much better. That sense of accomplishment can be intoxicating. After all, how many of your polymyalgia rheumatica patients worship you because you made the diagnosis and made them 100% better by putting them on prednisone? Yet we forget that although bad things rarely happen, that does not mean that they won’t happen.
In a beautiful book called "Where’d You Go, Bernadette?" the husband of the title character says that the brain is a discounting mechanism: "Let’s say you get a crack in your windshield and you’re really upset. Oh no, my windshield, it’s ruined, I can hardly see out of it, this is a tragedy! But you don’t have enough money to fix it, so you drive with it. In a month, someone asks you what happened to your windshield, and you say, What do you mean? Because your brain has discounted it. ... It’s for survival. You need to be prepared for novel experiences because often they signal danger."
The book is about an artist who we are led to believe has completed her downward spiral, going from genius to wacko. In the above passage, the artist’s husband is explaining to their daughter why they loved their family home so much, despite its state of extreme disrepair. They loved the house so much that they couldn’t see that it was a safety hazard.
As a fresh graduate I insisted on weaning everyone off prednisone, terrified of the potential side effects. Five years later and with the benefit of the collected wisdom of hundreds of rheumatologists before me, I have accepted that some people need a low dose of steroid to keep their disease quiet. I have used this and other, more toxic drugs to such great effects – taking for granted their ability to make people better – that I forget sometimes that they can cause serious problems.
Bad outcomes can and do happen in spite of our best intentions. In my case, my default is to blame myself. In my more melodramatic moments, I wonder if I deserve to be a doctor. But when I am done feeling angry or sad, or, frankly, feeling sorry for myself, then I need that discounting mechanism to kick in, to remind myself that this is one bad outcome out of many good outcomes. There are things beyond my control, and I cannot let a bad outcome keep me from doing the good work that I am still able to do.
There is a scene from the TV series "The West Wing" where the president asks one of his staffers if he thought the president was being kept from doing a great job because his demons were "shouting down the better angels" in his brain. Thankfully, my brain’s discounting mechanism helps keep the demons at bay.
Dr. Chan practices rheumatology in Pawtucket, R.I.
In my first year of fellowship, I met a delightful old man who had temporal arteritis. We naturally treated him with steroids, but he consequently suffered a vertebral fracture. He passed away soon after that from pneumonia that was probably aggravated by his inability to breathe deeply and cough appropriately.
An elderly patient with rheumatoid arthritis was diagnosed with lymphoma. For want of something to blame, his children blamed it on the methotrexate.
A woman with lupus nephritis got pregnant while on mycophenolate despite being on contraception. Her baby was born with malformed ears and eyes, and by all accounts will probably be deaf and blind.
We have been gifted with this mind-blowing ability to make our patients’ lives much better. That sense of accomplishment can be intoxicating. After all, how many of your polymyalgia rheumatica patients worship you because you made the diagnosis and made them 100% better by putting them on prednisone? Yet we forget that although bad things rarely happen, that does not mean that they won’t happen.
In a beautiful book called "Where’d You Go, Bernadette?" the husband of the title character says that the brain is a discounting mechanism: "Let’s say you get a crack in your windshield and you’re really upset. Oh no, my windshield, it’s ruined, I can hardly see out of it, this is a tragedy! But you don’t have enough money to fix it, so you drive with it. In a month, someone asks you what happened to your windshield, and you say, What do you mean? Because your brain has discounted it. ... It’s for survival. You need to be prepared for novel experiences because often they signal danger."
The book is about an artist who we are led to believe has completed her downward spiral, going from genius to wacko. In the above passage, the artist’s husband is explaining to their daughter why they loved their family home so much, despite its state of extreme disrepair. They loved the house so much that they couldn’t see that it was a safety hazard.
As a fresh graduate I insisted on weaning everyone off prednisone, terrified of the potential side effects. Five years later and with the benefit of the collected wisdom of hundreds of rheumatologists before me, I have accepted that some people need a low dose of steroid to keep their disease quiet. I have used this and other, more toxic drugs to such great effects – taking for granted their ability to make people better – that I forget sometimes that they can cause serious problems.
Bad outcomes can and do happen in spite of our best intentions. In my case, my default is to blame myself. In my more melodramatic moments, I wonder if I deserve to be a doctor. But when I am done feeling angry or sad, or, frankly, feeling sorry for myself, then I need that discounting mechanism to kick in, to remind myself that this is one bad outcome out of many good outcomes. There are things beyond my control, and I cannot let a bad outcome keep me from doing the good work that I am still able to do.
There is a scene from the TV series "The West Wing" where the president asks one of his staffers if he thought the president was being kept from doing a great job because his demons were "shouting down the better angels" in his brain. Thankfully, my brain’s discounting mechanism helps keep the demons at bay.
Dr. Chan practices rheumatology in Pawtucket, R.I.
New Breast Cancer Research Group Aims To Improve Veteran Survival Rates
Over 200,000 new cases of breast cancer are diagnosed in the U.S. annually, according to the National Cancer Institute. Dr. Anita Aggarwal, an oncologist at the Washington, DC VAMC, recently completed an extensive study to compare male and female breast cancer in VA patients. The study found that males with breast cancer had higher stage and grade at presentation and higher mortality compared with females. But, when adjusted for age, stage, and grade, males had better survival rates.
Federal Practitioner talked with Dr. Aggarwal about the new breast cancer research group she is currently developing at the Washington, DC VAMC. Dr. Aggarwal’s hope is to help doctors in the federal health system to identify etiology, biology, and improve treatment of both male and female patients with breast cancer.
Federal Practitioner: What is a breast cancer research group, and why do you think one needs to be created at the VA?
Anita Aggarwal, MD: I would like to build a breast cancer research group with the help of all oncologists and health professionals who take care of patients with breast cancer at all VAMCs nationwide. From my retrospective comparison study, breast cancer in our veterans seems to be different than in the general population. The goal of this research group will be to build a data bank with all the pertinent information as well as tissue gene profiling. This will help us to diagnose them early and treat accordingly in a timely fashion.
FP: As more women join the military, do you think breast cancer treatment at the VA will change?
AA: As the number of female veterans increases, I suspect we will see an increase in the number of female patients with breast cancer. As reported by the 2012 Women’s Task Force, women are now the fastest growing cohort within the veteran community. In 2011, there were about 1.8 million women veterans, which is about 8% of the 22.2 million vets in the VA system. That is expected to increase to 2 million in 2020, at which time women will make up to 10.7% of the total vet population. To accommodate these changing needs, the VHA made women’s health programs a priority in 2007, including a recommendation to improve access to screening, mammograms, and related breast care services. The treatment of breast cancer is becoming more personalized with the advent of new, targeted therapies. The treatment will change if we can identify different biological targets in veterans with breast cancer.
FP: Do you think all veterans, male and female, are more susceptible to breast cancer than is the general population?
AA: In general, incidence of breast cancer is decreasing but, as per the Walter Reed General Hospital and USA Today, breast cancer is one of the most common cancers in our veterans. Not only is the number of women with breast cancer increasing, but so too is the number of male veterans with breast cancer. In general, breast cancer in males is rare, < 1% of all breast cancer cases. Our retrospective data from 1995 to 2012 had more than 6,000 patients with breast cancer; out of that, 1,100 were males with breast cancer.
FP: What do you think needs to be changed about how breast cancer is approached in veterans?
AA: I don’t have an answer to that, but if we can build a breast cancer research group, we may be able to answer some of these questions. Collection of the data prospectively on all of breast cancer at all VA facilities will help us to understand etiology, risk factors, and biology by molecular profiling. In turn, this will help health professionals to give personalized treatment to veterans.
Email: [email protected]
Read more about Dr. Aggarwal’s breast cancer initiative: http://www.research.va.gov/currents/spring2014/spring2014-45.cfm
Over 200,000 new cases of breast cancer are diagnosed in the U.S. annually, according to the National Cancer Institute. Dr. Anita Aggarwal, an oncologist at the Washington, DC VAMC, recently completed an extensive study to compare male and female breast cancer in VA patients. The study found that males with breast cancer had higher stage and grade at presentation and higher mortality compared with females. But, when adjusted for age, stage, and grade, males had better survival rates.
Federal Practitioner talked with Dr. Aggarwal about the new breast cancer research group she is currently developing at the Washington, DC VAMC. Dr. Aggarwal’s hope is to help doctors in the federal health system to identify etiology, biology, and improve treatment of both male and female patients with breast cancer.
Federal Practitioner: What is a breast cancer research group, and why do you think one needs to be created at the VA?
Anita Aggarwal, MD: I would like to build a breast cancer research group with the help of all oncologists and health professionals who take care of patients with breast cancer at all VAMCs nationwide. From my retrospective comparison study, breast cancer in our veterans seems to be different than in the general population. The goal of this research group will be to build a data bank with all the pertinent information as well as tissue gene profiling. This will help us to diagnose them early and treat accordingly in a timely fashion.
FP: As more women join the military, do you think breast cancer treatment at the VA will change?
AA: As the number of female veterans increases, I suspect we will see an increase in the number of female patients with breast cancer. As reported by the 2012 Women’s Task Force, women are now the fastest growing cohort within the veteran community. In 2011, there were about 1.8 million women veterans, which is about 8% of the 22.2 million vets in the VA system. That is expected to increase to 2 million in 2020, at which time women will make up to 10.7% of the total vet population. To accommodate these changing needs, the VHA made women’s health programs a priority in 2007, including a recommendation to improve access to screening, mammograms, and related breast care services. The treatment of breast cancer is becoming more personalized with the advent of new, targeted therapies. The treatment will change if we can identify different biological targets in veterans with breast cancer.
FP: Do you think all veterans, male and female, are more susceptible to breast cancer than is the general population?
AA: In general, incidence of breast cancer is decreasing but, as per the Walter Reed General Hospital and USA Today, breast cancer is one of the most common cancers in our veterans. Not only is the number of women with breast cancer increasing, but so too is the number of male veterans with breast cancer. In general, breast cancer in males is rare, < 1% of all breast cancer cases. Our retrospective data from 1995 to 2012 had more than 6,000 patients with breast cancer; out of that, 1,100 were males with breast cancer.
FP: What do you think needs to be changed about how breast cancer is approached in veterans?
AA: I don’t have an answer to that, but if we can build a breast cancer research group, we may be able to answer some of these questions. Collection of the data prospectively on all of breast cancer at all VA facilities will help us to understand etiology, risk factors, and biology by molecular profiling. In turn, this will help health professionals to give personalized treatment to veterans.
Email: [email protected]
Read more about Dr. Aggarwal’s breast cancer initiative: http://www.research.va.gov/currents/spring2014/spring2014-45.cfm
Over 200,000 new cases of breast cancer are diagnosed in the U.S. annually, according to the National Cancer Institute. Dr. Anita Aggarwal, an oncologist at the Washington, DC VAMC, recently completed an extensive study to compare male and female breast cancer in VA patients. The study found that males with breast cancer had higher stage and grade at presentation and higher mortality compared with females. But, when adjusted for age, stage, and grade, males had better survival rates.
Federal Practitioner talked with Dr. Aggarwal about the new breast cancer research group she is currently developing at the Washington, DC VAMC. Dr. Aggarwal’s hope is to help doctors in the federal health system to identify etiology, biology, and improve treatment of both male and female patients with breast cancer.
Federal Practitioner: What is a breast cancer research group, and why do you think one needs to be created at the VA?
Anita Aggarwal, MD: I would like to build a breast cancer research group with the help of all oncologists and health professionals who take care of patients with breast cancer at all VAMCs nationwide. From my retrospective comparison study, breast cancer in our veterans seems to be different than in the general population. The goal of this research group will be to build a data bank with all the pertinent information as well as tissue gene profiling. This will help us to diagnose them early and treat accordingly in a timely fashion.
FP: As more women join the military, do you think breast cancer treatment at the VA will change?
AA: As the number of female veterans increases, I suspect we will see an increase in the number of female patients with breast cancer. As reported by the 2012 Women’s Task Force, women are now the fastest growing cohort within the veteran community. In 2011, there were about 1.8 million women veterans, which is about 8% of the 22.2 million vets in the VA system. That is expected to increase to 2 million in 2020, at which time women will make up to 10.7% of the total vet population. To accommodate these changing needs, the VHA made women’s health programs a priority in 2007, including a recommendation to improve access to screening, mammograms, and related breast care services. The treatment of breast cancer is becoming more personalized with the advent of new, targeted therapies. The treatment will change if we can identify different biological targets in veterans with breast cancer.
FP: Do you think all veterans, male and female, are more susceptible to breast cancer than is the general population?
AA: In general, incidence of breast cancer is decreasing but, as per the Walter Reed General Hospital and USA Today, breast cancer is one of the most common cancers in our veterans. Not only is the number of women with breast cancer increasing, but so too is the number of male veterans with breast cancer. In general, breast cancer in males is rare, < 1% of all breast cancer cases. Our retrospective data from 1995 to 2012 had more than 6,000 patients with breast cancer; out of that, 1,100 were males with breast cancer.
FP: What do you think needs to be changed about how breast cancer is approached in veterans?
AA: I don’t have an answer to that, but if we can build a breast cancer research group, we may be able to answer some of these questions. Collection of the data prospectively on all of breast cancer at all VA facilities will help us to understand etiology, risk factors, and biology by molecular profiling. In turn, this will help health professionals to give personalized treatment to veterans.
Email: [email protected]
Read more about Dr. Aggarwal’s breast cancer initiative: http://www.research.va.gov/currents/spring2014/spring2014-45.cfm
Circadian disruption negatively affects RBCs
Credit: NHLBI
MANCHESTER—Preclinical research indicates that circadian disruption has severe adverse effects on red blood cells (RBCs), a finding that might possibly explain the high incidence of heart disease observed in shift workers.
The study also showed the negative effects could be reduced under hypoxic conditions. Hypoxia in combination with circadian disruption produced fresh RBCs.
And this, according to researchers, suggests blood donations might help decrease the risk of cardiovascular disease in shift workers.
This research was presented at the 2014 Annual Main Meeting of the Society for Experimental Biology (SEB). It was also published in Chronobiology International.
The researchers, led by Margit Egg, PhD, of the University of Innsbruck in Austria, set out to investigate the impact of circadian disruption on hypoxic signaling and the cardiovascular system.
The team used zebrafish, a model organism that, like humans, is active during the day. To disrupt circadian rhythms, the researchers subjected the fish to alternate short days (7 hours) and long days (21 hours), resembling shift patterns common in industry.
Results showed that circadian disruption increased the number of aged RBCs that accumulated in the blood vessels.
“Normally, there is a balance between newly produced red blood cells and old ones which are removed from the blood,” Dr Egg noted.
Old cells are less flexible and become stuck in the spleen and liver, where they are engulfed by white blood cells. Circadian disruption appears to inhibit this removal process, but the researchers are unsure why this is the case.
They do know that having large aggregates of old RBCs in the vessels increases the chance of a clot that could lead to a heart attack. This may explain why shift workers have a 30% higher risk of cardiovascular disease. In addition, the decreased functionality of the aged cells reduces the oxygen-carrying capacity of the blood.
However, the researchers also found that zebrafish were less affected by circadian disruption if they were simultaneously exposed to hypoxic conditions. This is because hypoxia stimulates the production of fresh RBCs.
The team noted that the cell signaling pathways that regulate circadian rhythms and the hypoxic response are intrinsically linked. This is based on the observation that genes activated by hypoxia, such as erythropoietin, normally show a daily rhythm of activity that becomes disturbed under hypoxic conditions.
“In zebrafish, hypoxia in combination with jetlag led to the production of fresh red blood cells, counteracting the harmful consequences of jetlag and reducing mortality by 10%,” Dr Egg noted.
“Blood donations in humans also stimulate the generation of new fresh erythrocytes. Therefore, blood donations on a regular basis might be a very simple measure to help decrease the cardiovascular risk in human shift workers.”
Dr Egg and her colleagues are currently investigating whether circadian disruption affects any other physiological processes, apart from the cardiovascular system.
Credit: NHLBI
MANCHESTER—Preclinical research indicates that circadian disruption has severe adverse effects on red blood cells (RBCs), a finding that might possibly explain the high incidence of heart disease observed in shift workers.
The study also showed the negative effects could be reduced under hypoxic conditions. Hypoxia in combination with circadian disruption produced fresh RBCs.
And this, according to researchers, suggests blood donations might help decrease the risk of cardiovascular disease in shift workers.
This research was presented at the 2014 Annual Main Meeting of the Society for Experimental Biology (SEB). It was also published in Chronobiology International.
The researchers, led by Margit Egg, PhD, of the University of Innsbruck in Austria, set out to investigate the impact of circadian disruption on hypoxic signaling and the cardiovascular system.
The team used zebrafish, a model organism that, like humans, is active during the day. To disrupt circadian rhythms, the researchers subjected the fish to alternate short days (7 hours) and long days (21 hours), resembling shift patterns common in industry.
Results showed that circadian disruption increased the number of aged RBCs that accumulated in the blood vessels.
“Normally, there is a balance between newly produced red blood cells and old ones which are removed from the blood,” Dr Egg noted.
Old cells are less flexible and become stuck in the spleen and liver, where they are engulfed by white blood cells. Circadian disruption appears to inhibit this removal process, but the researchers are unsure why this is the case.
They do know that having large aggregates of old RBCs in the vessels increases the chance of a clot that could lead to a heart attack. This may explain why shift workers have a 30% higher risk of cardiovascular disease. In addition, the decreased functionality of the aged cells reduces the oxygen-carrying capacity of the blood.
However, the researchers also found that zebrafish were less affected by circadian disruption if they were simultaneously exposed to hypoxic conditions. This is because hypoxia stimulates the production of fresh RBCs.
The team noted that the cell signaling pathways that regulate circadian rhythms and the hypoxic response are intrinsically linked. This is based on the observation that genes activated by hypoxia, such as erythropoietin, normally show a daily rhythm of activity that becomes disturbed under hypoxic conditions.
“In zebrafish, hypoxia in combination with jetlag led to the production of fresh red blood cells, counteracting the harmful consequences of jetlag and reducing mortality by 10%,” Dr Egg noted.
“Blood donations in humans also stimulate the generation of new fresh erythrocytes. Therefore, blood donations on a regular basis might be a very simple measure to help decrease the cardiovascular risk in human shift workers.”
Dr Egg and her colleagues are currently investigating whether circadian disruption affects any other physiological processes, apart from the cardiovascular system.
Credit: NHLBI
MANCHESTER—Preclinical research indicates that circadian disruption has severe adverse effects on red blood cells (RBCs), a finding that might possibly explain the high incidence of heart disease observed in shift workers.
The study also showed the negative effects could be reduced under hypoxic conditions. Hypoxia in combination with circadian disruption produced fresh RBCs.
And this, according to researchers, suggests blood donations might help decrease the risk of cardiovascular disease in shift workers.
This research was presented at the 2014 Annual Main Meeting of the Society for Experimental Biology (SEB). It was also published in Chronobiology International.
The researchers, led by Margit Egg, PhD, of the University of Innsbruck in Austria, set out to investigate the impact of circadian disruption on hypoxic signaling and the cardiovascular system.
The team used zebrafish, a model organism that, like humans, is active during the day. To disrupt circadian rhythms, the researchers subjected the fish to alternate short days (7 hours) and long days (21 hours), resembling shift patterns common in industry.
Results showed that circadian disruption increased the number of aged RBCs that accumulated in the blood vessels.
“Normally, there is a balance between newly produced red blood cells and old ones which are removed from the blood,” Dr Egg noted.
Old cells are less flexible and become stuck in the spleen and liver, where they are engulfed by white blood cells. Circadian disruption appears to inhibit this removal process, but the researchers are unsure why this is the case.
They do know that having large aggregates of old RBCs in the vessels increases the chance of a clot that could lead to a heart attack. This may explain why shift workers have a 30% higher risk of cardiovascular disease. In addition, the decreased functionality of the aged cells reduces the oxygen-carrying capacity of the blood.
However, the researchers also found that zebrafish were less affected by circadian disruption if they were simultaneously exposed to hypoxic conditions. This is because hypoxia stimulates the production of fresh RBCs.
The team noted that the cell signaling pathways that regulate circadian rhythms and the hypoxic response are intrinsically linked. This is based on the observation that genes activated by hypoxia, such as erythropoietin, normally show a daily rhythm of activity that becomes disturbed under hypoxic conditions.
“In zebrafish, hypoxia in combination with jetlag led to the production of fresh red blood cells, counteracting the harmful consequences of jetlag and reducing mortality by 10%,” Dr Egg noted.
“Blood donations in humans also stimulate the generation of new fresh erythrocytes. Therefore, blood donations on a regular basis might be a very simple measure to help decrease the cardiovascular risk in human shift workers.”
Dr Egg and her colleagues are currently investigating whether circadian disruption affects any other physiological processes, apart from the cardiovascular system.
Why Transfusion BPAs Are Overridden
Transfusion of blood products has multiple clinical applications, yet when used outside of recommended guidelines it is associated with increased cost, waste, morbidity, and mortality.[1] Studies reviewing restrictive versus liberal blood transfusion strategies have demonstrated no benefit to liberal strategies over restrictive strategies[2, 3, 4, 5, 6, 7, 8, 9, 10] and possibly even harm.[11] Given the risks and real costs of blood transfusions occurring outside of recommended guidelines, professional societies in hematology, anesthesiology, and hospital medicine each include excessive blood transfusions among their top 5 questionable clinical practices in the American Board of Internal Medicine Foundation's Choosing Wisely initiative.[12] To modify behaviors around blood transfusion practices, hospitals and blood banks may need to provide clinical decision support (CDS) for physicians.
The conventional approach to CDS is direct education and training campaigns, but there is a unique opportunity for intelligent decision support at the point of care through electronic medical record (EMR) systems directly integrated with computerized physician order entry (CPOE).[13, 14, 15] Prior work at Stanford toward reducing unnecessary blood transfusions started with hospital‐wide education campaigns, which brought down the percentage of transfusions ordered for patients with hemoglobin (Hgb) >8 g/dL from 57% to 52%. Further reduction to <30% was achieved after the introduction of an interruptive best practice alert (BPA) integrated into the CPOE transfusion ordering process.[16, 17] Specifically, providers attempting to order a blood transfusion for patients with an EMR‐determined Hgb >7 are presented with a BPA popup reminding them of best practice guidelines and a prompt to either abort the transfusion or provide a reason to override the BPA and proceed.
It remains uncertain why up to 30% of transfusions continue to occur outside of recommended guidelines in spite of interruptive prompts. This study demonstrates a general approach to secondary use of clinical data from the EMR toward understanding provider behavior, specifically by analyzing free‐text comments linked to transfusion override behavior and identifying the type of providers interacting with the BPAs.
MATERIALS AND METHODS
At Stanford University Hospital, a 447‐bed academic tertiary care center servicing adult patients, clinicians order blood transfusions through an EMR+CPOE system. When an order for red blood cell transfusion is attempted, the EMR evaluates the patient chart for specific criteria based on previously published guidelines.[18] Specifically, the BPA will review the last recorded Hgb value and trigger if the Hgb is >8, or if the Hgb is >7 and there is no concurrent EMR problem‐list entry related to acute coronary syndrome or acute hemorrhage. Once the blood transfusion BPA triggers, the ordering provider is presented with an interruptive prompt reminding them of best practice guidelines and the 3 most recent Hgb values for the patient.[16] From there, the provider may either abort the transfusion or override the BPA and proceed. Overrides require the provider to select a reason from a predefined list of institutionally accepted transfusion indications including acute bleeding, acute coronary syndrome and Hgb <8, and postoperative cardiothoracic surgery and Hgb <8. If none of the predefined override reasons are selected, the provider simply selects other, with the option of a free‐text comment to elaborate their rationale.
Data from provider interactions with the BPA were collected from the EMR across all inpatient wards for 8 months after the implementation period. Data collected from each interaction included the patient identifier, alert description, action taken, ordering provider identifier, ordering provider type (job title), optional comments for overriding the BPA, and date and time.
The free‐text override comments were independently reviewed by 2 licensed physicians, tagging them into a set of general categories by iterative inductive analysis of the comment content. Individual comments were allowed multiple possible category tags (eg, coronary artery disease and symptomatic). The initial tagging process was expedited by isolating common keywords in the override comments and assigning likely category tags to each, as in Table 2. The 2 physician reviewers then manually inspected all comments with the option to revise the initial category tagging to ensure validity. Many category tags occurred sporadically and were aggregated into more general categories, such as hematologic disorder (includes myelodysplastic syndrome, myelofibrosis, multiple myeloma, sickle cell, thalassemia, Waldenstrom's), symptomatic (includes fatigue, lightheaded, short of breath), and per other medical doctor [MD] (includes any other physician direction, primarily specialty consultation services).
To assess the inter‐rater agreement of this category tagging between the 2 reviewers, a confusion matrix similar to the example in Table 1 was setup for each tag used. Several agreement statistics are calculated based on the confusion matrix, including the positive agreement rate (Pa+) and Cohen's kappa statistic (). Kappa statistic values range from 1 to +1, with values <0 indicating no agreement and values >0.8 indicating near perfect agreement.[19] To reject the null hypothesis that the 2 reviewers could have independently arrived at their similar tagging assignments by chance, a 2 test was applied for each confusion matrix, with Yates' correction to avoid overestimating statistical significance given the low rates of inter‐rater disagreement.[20]
Reviewer 1 Tags "Surgery" | ||||
---|---|---|---|---|
Yes | No | Total | ||
| ||||
Reviewer 2 Tags "Surgery" | Yes | 143 | 11 | 154 |
No | 5 | 820 | 825 | |
Total | 148 | 831 | 979 |
Category Tag | Keyword | Keyword Count |
---|---|---|
| ||
Hgb 78 | 7.1, 7.2, 7.8, 7.9, 8, <8 | 360 |
BMT | BMT | 359 |
Symptomatic | Symptomatic | 187 |
Surgery | Postop, post‐op, surgery, surgical | 176 |
Dropping Hgb | Down, drop, dropping | 117 |
Chemotherapy | Chemo, chemotherapy | 88 |
Per other MD | Per | 87 |
Transplant | Transplant | 70 |
Cardiac | Cardiac | 66 |
Bleeding | Bleeding | 65 |
Procedure | Procedure | 65 |
Hgb <7 | 7 | 58 |
Hypotension | Hypotension | 51 |
Protocol | Protocol | 51 |
Cirrhosis | Liver | 50 |
Imminent discharge | Discharge | 49 |
Leukemia, acute | AML | 44 |
Cancer | Cancer | 37 |
Sepsis | Sepsis | 32 |
Tachycardia | Tachycardia | 28 |
RESULTS
During the data collection period from January 1, 2011 to August 31, 2012, the blood transfusion BPA fired in 11,791 instances, of which 10,642 recorded sufficient data for analysis (Figure 1). The ordering provider proceeded to override the BPA and continued with transfusion in 98% of cases (10,442/10,642). Acute bleeding" was the most common structured response (34%). The majority of BPA overrides used the general purpose other structured response option accounting for 56% (5886/10,442) of override responses, of which 37% (2185/5886) entered a free‐text comment elaborating the override reason. With 3701 nonresponders (other overrides with no free‐text comment), the overall response rate was 65% (6941/10,642).

With a handful of free‐text comments included with structured override responses (eg, 28 acute bleeding overrides included additional comment from the provider), a total of 2216 override comments were available for analysis. Using an initial selection of keyword‐tag associations, as in Table 2, 95% (2104/2216) of the override comments had a preliminary category tagging assigned. After manual review and revision by the first physician reviewer, 74% (1633/2216) of the comments retained their automated tags, whereas 26% (583/2216) were updated based on the reviewer's assessment of validity. This included 112 comments lacking automated tags the reviewer manually added, as well as 471 comments with automated tags revised by the reviewer.
The most common override category tags are presented in Figure 2 and Figure 3 for BPAs triggered in response to blood transfusions ordered for patients with Hgb 78 and Hgb >8, respectively. The agreed+ percentages correspond to the number of comments where the 2 physician reviewers both assigned the respective category tag (Pa+), whereas the disagreed percentages correspond to comments where the reviewers differed (Pd=1‐Pa). By Yates' corrected 2 analysis, P was <1010 for independence between reviewer tag assignments for all tags assessed. Kappa statistics are reported in the figures to describe inter‐rater agreement.


Resident physicians were the primary ordering provider group, accounting for approximately 55% (5863/10,642) of BPA interactions, followed by registered nurses, fellows, and attending physicians.
DISCUSSION
Prior work has established that an interruptive BPA to provide decision support against inappropriate blood transfusions can drive a significant and sustained reduction in unnecessary transfusions,[16] especially when satisfying the primary features of effective decision support.[14] The quantity of transfusions directly aborted by the BPA (only 2% in this case) does not nearly account for the total observed reductions in transfusions, suggesting that the BPA yields an indirect teaching effect over time beyond direct interruption. In other words, once a user has been interrupted by the BPA several times, they will be discouraged from even attempting to order inappropriate blood transfusions in the future.
Despite the improvements above, there remains a substantial fraction (up to 30%) of blood transfusions occurring outside of recommended guidelines where providers specifically override the BPA prompt.[21] This work is the first structured analysis of such BPA override behavior by generalizable methods of EMR data analysis to guide further improvements.
Analysis of the override behavior focused primarily on the free‐text comments explaining provider rationales for overriding the BPA. These comments were categorized by 2 physician reviewers, with P<1010 for all category tags, rejecting the null hypothesis that the 2 reviewers could have independently arrived at their similar category tags by chance. Further assessment of inter‐rater agreement was generally excellent, with >0.8 in the majority of cases. The remaining cases (ie, Hgb 78, per other MD, anemia, cardiac) still had substantial agreement, with >0.6. These disagreements almost universally occurred when a reviewer assigned a subset of the category tags assigned by the other reviewer. For example, 1 reviewer may tag a comment bone marrow transplant (BMT) patient with Hgb 7.2 with BMT and Hgb 78, whereas the other would only cite BMT.
Figure 2 and Figure 3 highlight the varied categories of responses, with most categories comprising <4% of the available responses. Among the most common override reasons are structured protocols for specialty services, as in the stem cell transplant service, whose protocol recommends transfusing blood when Hgb <8 rather than Hgb <7. In these cases, the BPA is unlikely to change protocolized behavior, thus overall workflow would likely be improved by adding a structured BPA override option for these protocols.
Analysis of the override comments did expose some relatively common and questionable transfusion practices, including perioperative and periprocedural transfusions, as well as anticipation of imminent discharge. Prior studies indicate that transfusions in anticipation of surgical or procedural intervention provide no benefit compared to responding to blood requirements intraoperatively as needed,[3, 22, 23] and imminent discharge of a patient is not a well‐recognized reason to transfuse outside of guidelines. The identification of these questionable and relatively common practices identifies opportunities for targeted education and training campaigns.
Symptomatic anemia was 1 of the more commonly cited BPA override reasons with a fraction providing a specific symptom such as fatigue, lightheadedness, or shortness of breath. Although the pervasiveness of this rationale may speak to adding it as a structured BPA override option, the nonspecific, subjective, and nonevidence‐based nature of symptom‐driven blood transfusions suggests that ongoing interruptive BPA prompts can still be useful to remind providers of the risks and guideline‐based approaches to such cases.
Limitations of the analysis are revealed as a fraction of BPA events did not fully record all relevant data, preventing proper analysis. Override comments suggest the BPA was triggering inappropriately for patients appropriately below the recommended transfusion threshold of Hgb <7, assuming provider free‐textentered values were accurate. Review of these cases showed some variability, such as when providers based their transfusion decision on a hematocrit of 20 rather than a Hgb of 7. Many comments also stated nonthreshold Hgb values, such as Hgb 7.2, seeming to imply that the value was close enough to the recommended threshold to justify overriding the transfusion prompt.
The most significant limitation of this study is the substantial fraction of nonresponder BPA transfusion overrides with a nonspecific other reason and no text commentary, comprising 34% (3670/10,642) of all BPA interactions and 62% (3670/5886) of all other overrides. Although the BPA is easily overridden by design to avoid workflow disruption that could compromise the priority of patient care, the nonresponses raise concern for skewed interpretation of the override data. General studies in survey responses provide reassurance that lower response rates do not necessarily indicate response bias,[24] with response rates as low as 25% yielding results statistically indistinguishable from more rigorous methods achieving >50% response rates.[25] In this specific case, response bias is better characterized by comparing ordering provider characteristics for the other overrides with and without free‐text comments. Specifically, Figure 4 shows the distribution of other overrides by provider type (job title) and provider home department (where available from physician department registries), separated by whether a free‐text comment was left. For each sub‐group, a 2 analysis compared the observed versus expected proportion of providers leaving comments based on the null hypothesis that leaving a comment was independent of membership in the subgroup. Similar proportions with nonsignificant P values suggest against significant response bias for most subgroups, but the data do indicate that this work likely under‐represents the opinion of fellows, physician assistants, and neurosurgeons, while slightly over‐representing the opinion of medicine, general surgery, and obstetrics/gynecology practitioners. Given that the under‐represented groups overall constitute a small minority of the total BPA interactions, this work should still be generalizable to the majority of transfusion behavior.

Further review of the ordering provider type (job title) distribution indicates that the vast majority of providers who actually interact with BPAs in this academic hospital are resident physicians. Similarly notable is that 25% of BPAs trigger for registered nurses. Upon review of hospital practices, we confirmed that nurses can enter transfusion orders on behalf of MD cosigners, generally in the context of a verbal order or routine treatment protocol, most notably on the stem cell transplant service. The prevalence of resident, nurse, nurse practitioner, and physician assistant order entry overall indicates that the providers encountering the BPA often do not have the negotiating power to accept or override the prompts, specifically defying the meaningful use goal of decision‐making providers directly interacting with CPOE and decision support prompts.[26]
The theoretical intelligence of the BPA not to trigger in well‐accepted cases of transfusion, where acute bleeding is occurring based on the presence of bleeding related items in the patient's problem list, is demonstrated to be limited. Acute bleeding represented the most common structured override response. This is likely multifactorial, but is largely the result of inconsistent usage of the patient problem lists that the BPA would depend upon. Another commonly cited override explanation was for a dropping Hgb without a specific bleeding source. This could point toward the BPA triggering an algorithm incorporating the last several Hgb values to assess the trajectory. Even then, however, guidelines would advocate holding transfusion and proceeding with serial monitoring of Hgb levels until an accepted transfusion threshold was actually breached.
This analysis demonstrates a general approach to secondary analysis of EMR data, in this case to provide insight into the specific question of why providers continue to order costly, unnecessary, and potentially harmful blood transfusions in spite of an interruptive BPA CDS tool. Limitations of the BPA are now better understood, including technical aspects of accounting for all decision‐making data, the frequency of nonresponse for override rationale, and that the providers interacting with the BPAs often do not have the negotiating power to change ordering behavior. The analysis recognizes protocolized behaviors that should be integrated into the CDS algorithms, and specification of symptomatic anemia as a common albeit subjective indication for blood transfusion. A wide swath of individually uncommon rationales drive transfusion override behavior, motivating further EMR‐based analysis to more efficiently recognize common scenarios (eg, perioperative/procedural, imminent discharge) for directed education and training interventions than can be achieved by conventional chart review.
Acknowledgements
The authors thank Sylvia Bereknyei for consultation on qualitative analysis methods, C.J. Garst for providing the dataset, David Iberri for contributing to early manuscript drafts, Paul Maggio for designing the original BPA, and Debra Green and Brett Toensing for providing staff department registries.
Disclosure: Nothing to report.
Transfusion of blood products has multiple clinical applications, yet when used outside of recommended guidelines it is associated with increased cost, waste, morbidity, and mortality.[1] Studies reviewing restrictive versus liberal blood transfusion strategies have demonstrated no benefit to liberal strategies over restrictive strategies[2, 3, 4, 5, 6, 7, 8, 9, 10] and possibly even harm.[11] Given the risks and real costs of blood transfusions occurring outside of recommended guidelines, professional societies in hematology, anesthesiology, and hospital medicine each include excessive blood transfusions among their top 5 questionable clinical practices in the American Board of Internal Medicine Foundation's Choosing Wisely initiative.[12] To modify behaviors around blood transfusion practices, hospitals and blood banks may need to provide clinical decision support (CDS) for physicians.
The conventional approach to CDS is direct education and training campaigns, but there is a unique opportunity for intelligent decision support at the point of care through electronic medical record (EMR) systems directly integrated with computerized physician order entry (CPOE).[13, 14, 15] Prior work at Stanford toward reducing unnecessary blood transfusions started with hospital‐wide education campaigns, which brought down the percentage of transfusions ordered for patients with hemoglobin (Hgb) >8 g/dL from 57% to 52%. Further reduction to <30% was achieved after the introduction of an interruptive best practice alert (BPA) integrated into the CPOE transfusion ordering process.[16, 17] Specifically, providers attempting to order a blood transfusion for patients with an EMR‐determined Hgb >7 are presented with a BPA popup reminding them of best practice guidelines and a prompt to either abort the transfusion or provide a reason to override the BPA and proceed.
It remains uncertain why up to 30% of transfusions continue to occur outside of recommended guidelines in spite of interruptive prompts. This study demonstrates a general approach to secondary use of clinical data from the EMR toward understanding provider behavior, specifically by analyzing free‐text comments linked to transfusion override behavior and identifying the type of providers interacting with the BPAs.
MATERIALS AND METHODS
At Stanford University Hospital, a 447‐bed academic tertiary care center servicing adult patients, clinicians order blood transfusions through an EMR+CPOE system. When an order for red blood cell transfusion is attempted, the EMR evaluates the patient chart for specific criteria based on previously published guidelines.[18] Specifically, the BPA will review the last recorded Hgb value and trigger if the Hgb is >8, or if the Hgb is >7 and there is no concurrent EMR problem‐list entry related to acute coronary syndrome or acute hemorrhage. Once the blood transfusion BPA triggers, the ordering provider is presented with an interruptive prompt reminding them of best practice guidelines and the 3 most recent Hgb values for the patient.[16] From there, the provider may either abort the transfusion or override the BPA and proceed. Overrides require the provider to select a reason from a predefined list of institutionally accepted transfusion indications including acute bleeding, acute coronary syndrome and Hgb <8, and postoperative cardiothoracic surgery and Hgb <8. If none of the predefined override reasons are selected, the provider simply selects other, with the option of a free‐text comment to elaborate their rationale.
Data from provider interactions with the BPA were collected from the EMR across all inpatient wards for 8 months after the implementation period. Data collected from each interaction included the patient identifier, alert description, action taken, ordering provider identifier, ordering provider type (job title), optional comments for overriding the BPA, and date and time.
The free‐text override comments were independently reviewed by 2 licensed physicians, tagging them into a set of general categories by iterative inductive analysis of the comment content. Individual comments were allowed multiple possible category tags (eg, coronary artery disease and symptomatic). The initial tagging process was expedited by isolating common keywords in the override comments and assigning likely category tags to each, as in Table 2. The 2 physician reviewers then manually inspected all comments with the option to revise the initial category tagging to ensure validity. Many category tags occurred sporadically and were aggregated into more general categories, such as hematologic disorder (includes myelodysplastic syndrome, myelofibrosis, multiple myeloma, sickle cell, thalassemia, Waldenstrom's), symptomatic (includes fatigue, lightheaded, short of breath), and per other medical doctor [MD] (includes any other physician direction, primarily specialty consultation services).
To assess the inter‐rater agreement of this category tagging between the 2 reviewers, a confusion matrix similar to the example in Table 1 was setup for each tag used. Several agreement statistics are calculated based on the confusion matrix, including the positive agreement rate (Pa+) and Cohen's kappa statistic (). Kappa statistic values range from 1 to +1, with values <0 indicating no agreement and values >0.8 indicating near perfect agreement.[19] To reject the null hypothesis that the 2 reviewers could have independently arrived at their similar tagging assignments by chance, a 2 test was applied for each confusion matrix, with Yates' correction to avoid overestimating statistical significance given the low rates of inter‐rater disagreement.[20]
Reviewer 1 Tags "Surgery" | ||||
---|---|---|---|---|
Yes | No | Total | ||
| ||||
Reviewer 2 Tags "Surgery" | Yes | 143 | 11 | 154 |
No | 5 | 820 | 825 | |
Total | 148 | 831 | 979 |
Category Tag | Keyword | Keyword Count |
---|---|---|
| ||
Hgb 78 | 7.1, 7.2, 7.8, 7.9, 8, <8 | 360 |
BMT | BMT | 359 |
Symptomatic | Symptomatic | 187 |
Surgery | Postop, post‐op, surgery, surgical | 176 |
Dropping Hgb | Down, drop, dropping | 117 |
Chemotherapy | Chemo, chemotherapy | 88 |
Per other MD | Per | 87 |
Transplant | Transplant | 70 |
Cardiac | Cardiac | 66 |
Bleeding | Bleeding | 65 |
Procedure | Procedure | 65 |
Hgb <7 | 7 | 58 |
Hypotension | Hypotension | 51 |
Protocol | Protocol | 51 |
Cirrhosis | Liver | 50 |
Imminent discharge | Discharge | 49 |
Leukemia, acute | AML | 44 |
Cancer | Cancer | 37 |
Sepsis | Sepsis | 32 |
Tachycardia | Tachycardia | 28 |
RESULTS
During the data collection period from January 1, 2011 to August 31, 2012, the blood transfusion BPA fired in 11,791 instances, of which 10,642 recorded sufficient data for analysis (Figure 1). The ordering provider proceeded to override the BPA and continued with transfusion in 98% of cases (10,442/10,642). Acute bleeding" was the most common structured response (34%). The majority of BPA overrides used the general purpose other structured response option accounting for 56% (5886/10,442) of override responses, of which 37% (2185/5886) entered a free‐text comment elaborating the override reason. With 3701 nonresponders (other overrides with no free‐text comment), the overall response rate was 65% (6941/10,642).

With a handful of free‐text comments included with structured override responses (eg, 28 acute bleeding overrides included additional comment from the provider), a total of 2216 override comments were available for analysis. Using an initial selection of keyword‐tag associations, as in Table 2, 95% (2104/2216) of the override comments had a preliminary category tagging assigned. After manual review and revision by the first physician reviewer, 74% (1633/2216) of the comments retained their automated tags, whereas 26% (583/2216) were updated based on the reviewer's assessment of validity. This included 112 comments lacking automated tags the reviewer manually added, as well as 471 comments with automated tags revised by the reviewer.
The most common override category tags are presented in Figure 2 and Figure 3 for BPAs triggered in response to blood transfusions ordered for patients with Hgb 78 and Hgb >8, respectively. The agreed+ percentages correspond to the number of comments where the 2 physician reviewers both assigned the respective category tag (Pa+), whereas the disagreed percentages correspond to comments where the reviewers differed (Pd=1‐Pa). By Yates' corrected 2 analysis, P was <1010 for independence between reviewer tag assignments for all tags assessed. Kappa statistics are reported in the figures to describe inter‐rater agreement.


Resident physicians were the primary ordering provider group, accounting for approximately 55% (5863/10,642) of BPA interactions, followed by registered nurses, fellows, and attending physicians.
DISCUSSION
Prior work has established that an interruptive BPA to provide decision support against inappropriate blood transfusions can drive a significant and sustained reduction in unnecessary transfusions,[16] especially when satisfying the primary features of effective decision support.[14] The quantity of transfusions directly aborted by the BPA (only 2% in this case) does not nearly account for the total observed reductions in transfusions, suggesting that the BPA yields an indirect teaching effect over time beyond direct interruption. In other words, once a user has been interrupted by the BPA several times, they will be discouraged from even attempting to order inappropriate blood transfusions in the future.
Despite the improvements above, there remains a substantial fraction (up to 30%) of blood transfusions occurring outside of recommended guidelines where providers specifically override the BPA prompt.[21] This work is the first structured analysis of such BPA override behavior by generalizable methods of EMR data analysis to guide further improvements.
Analysis of the override behavior focused primarily on the free‐text comments explaining provider rationales for overriding the BPA. These comments were categorized by 2 physician reviewers, with P<1010 for all category tags, rejecting the null hypothesis that the 2 reviewers could have independently arrived at their similar category tags by chance. Further assessment of inter‐rater agreement was generally excellent, with >0.8 in the majority of cases. The remaining cases (ie, Hgb 78, per other MD, anemia, cardiac) still had substantial agreement, with >0.6. These disagreements almost universally occurred when a reviewer assigned a subset of the category tags assigned by the other reviewer. For example, 1 reviewer may tag a comment bone marrow transplant (BMT) patient with Hgb 7.2 with BMT and Hgb 78, whereas the other would only cite BMT.
Figure 2 and Figure 3 highlight the varied categories of responses, with most categories comprising <4% of the available responses. Among the most common override reasons are structured protocols for specialty services, as in the stem cell transplant service, whose protocol recommends transfusing blood when Hgb <8 rather than Hgb <7. In these cases, the BPA is unlikely to change protocolized behavior, thus overall workflow would likely be improved by adding a structured BPA override option for these protocols.
Analysis of the override comments did expose some relatively common and questionable transfusion practices, including perioperative and periprocedural transfusions, as well as anticipation of imminent discharge. Prior studies indicate that transfusions in anticipation of surgical or procedural intervention provide no benefit compared to responding to blood requirements intraoperatively as needed,[3, 22, 23] and imminent discharge of a patient is not a well‐recognized reason to transfuse outside of guidelines. The identification of these questionable and relatively common practices identifies opportunities for targeted education and training campaigns.
Symptomatic anemia was 1 of the more commonly cited BPA override reasons with a fraction providing a specific symptom such as fatigue, lightheadedness, or shortness of breath. Although the pervasiveness of this rationale may speak to adding it as a structured BPA override option, the nonspecific, subjective, and nonevidence‐based nature of symptom‐driven blood transfusions suggests that ongoing interruptive BPA prompts can still be useful to remind providers of the risks and guideline‐based approaches to such cases.
Limitations of the analysis are revealed as a fraction of BPA events did not fully record all relevant data, preventing proper analysis. Override comments suggest the BPA was triggering inappropriately for patients appropriately below the recommended transfusion threshold of Hgb <7, assuming provider free‐textentered values were accurate. Review of these cases showed some variability, such as when providers based their transfusion decision on a hematocrit of 20 rather than a Hgb of 7. Many comments also stated nonthreshold Hgb values, such as Hgb 7.2, seeming to imply that the value was close enough to the recommended threshold to justify overriding the transfusion prompt.
The most significant limitation of this study is the substantial fraction of nonresponder BPA transfusion overrides with a nonspecific other reason and no text commentary, comprising 34% (3670/10,642) of all BPA interactions and 62% (3670/5886) of all other overrides. Although the BPA is easily overridden by design to avoid workflow disruption that could compromise the priority of patient care, the nonresponses raise concern for skewed interpretation of the override data. General studies in survey responses provide reassurance that lower response rates do not necessarily indicate response bias,[24] with response rates as low as 25% yielding results statistically indistinguishable from more rigorous methods achieving >50% response rates.[25] In this specific case, response bias is better characterized by comparing ordering provider characteristics for the other overrides with and without free‐text comments. Specifically, Figure 4 shows the distribution of other overrides by provider type (job title) and provider home department (where available from physician department registries), separated by whether a free‐text comment was left. For each sub‐group, a 2 analysis compared the observed versus expected proportion of providers leaving comments based on the null hypothesis that leaving a comment was independent of membership in the subgroup. Similar proportions with nonsignificant P values suggest against significant response bias for most subgroups, but the data do indicate that this work likely under‐represents the opinion of fellows, physician assistants, and neurosurgeons, while slightly over‐representing the opinion of medicine, general surgery, and obstetrics/gynecology practitioners. Given that the under‐represented groups overall constitute a small minority of the total BPA interactions, this work should still be generalizable to the majority of transfusion behavior.

Further review of the ordering provider type (job title) distribution indicates that the vast majority of providers who actually interact with BPAs in this academic hospital are resident physicians. Similarly notable is that 25% of BPAs trigger for registered nurses. Upon review of hospital practices, we confirmed that nurses can enter transfusion orders on behalf of MD cosigners, generally in the context of a verbal order or routine treatment protocol, most notably on the stem cell transplant service. The prevalence of resident, nurse, nurse practitioner, and physician assistant order entry overall indicates that the providers encountering the BPA often do not have the negotiating power to accept or override the prompts, specifically defying the meaningful use goal of decision‐making providers directly interacting with CPOE and decision support prompts.[26]
The theoretical intelligence of the BPA not to trigger in well‐accepted cases of transfusion, where acute bleeding is occurring based on the presence of bleeding related items in the patient's problem list, is demonstrated to be limited. Acute bleeding represented the most common structured override response. This is likely multifactorial, but is largely the result of inconsistent usage of the patient problem lists that the BPA would depend upon. Another commonly cited override explanation was for a dropping Hgb without a specific bleeding source. This could point toward the BPA triggering an algorithm incorporating the last several Hgb values to assess the trajectory. Even then, however, guidelines would advocate holding transfusion and proceeding with serial monitoring of Hgb levels until an accepted transfusion threshold was actually breached.
This analysis demonstrates a general approach to secondary analysis of EMR data, in this case to provide insight into the specific question of why providers continue to order costly, unnecessary, and potentially harmful blood transfusions in spite of an interruptive BPA CDS tool. Limitations of the BPA are now better understood, including technical aspects of accounting for all decision‐making data, the frequency of nonresponse for override rationale, and that the providers interacting with the BPAs often do not have the negotiating power to change ordering behavior. The analysis recognizes protocolized behaviors that should be integrated into the CDS algorithms, and specification of symptomatic anemia as a common albeit subjective indication for blood transfusion. A wide swath of individually uncommon rationales drive transfusion override behavior, motivating further EMR‐based analysis to more efficiently recognize common scenarios (eg, perioperative/procedural, imminent discharge) for directed education and training interventions than can be achieved by conventional chart review.
Acknowledgements
The authors thank Sylvia Bereknyei for consultation on qualitative analysis methods, C.J. Garst for providing the dataset, David Iberri for contributing to early manuscript drafts, Paul Maggio for designing the original BPA, and Debra Green and Brett Toensing for providing staff department registries.
Disclosure: Nothing to report.
Transfusion of blood products has multiple clinical applications, yet when used outside of recommended guidelines it is associated with increased cost, waste, morbidity, and mortality.[1] Studies reviewing restrictive versus liberal blood transfusion strategies have demonstrated no benefit to liberal strategies over restrictive strategies[2, 3, 4, 5, 6, 7, 8, 9, 10] and possibly even harm.[11] Given the risks and real costs of blood transfusions occurring outside of recommended guidelines, professional societies in hematology, anesthesiology, and hospital medicine each include excessive blood transfusions among their top 5 questionable clinical practices in the American Board of Internal Medicine Foundation's Choosing Wisely initiative.[12] To modify behaviors around blood transfusion practices, hospitals and blood banks may need to provide clinical decision support (CDS) for physicians.
The conventional approach to CDS is direct education and training campaigns, but there is a unique opportunity for intelligent decision support at the point of care through electronic medical record (EMR) systems directly integrated with computerized physician order entry (CPOE).[13, 14, 15] Prior work at Stanford toward reducing unnecessary blood transfusions started with hospital‐wide education campaigns, which brought down the percentage of transfusions ordered for patients with hemoglobin (Hgb) >8 g/dL from 57% to 52%. Further reduction to <30% was achieved after the introduction of an interruptive best practice alert (BPA) integrated into the CPOE transfusion ordering process.[16, 17] Specifically, providers attempting to order a blood transfusion for patients with an EMR‐determined Hgb >7 are presented with a BPA popup reminding them of best practice guidelines and a prompt to either abort the transfusion or provide a reason to override the BPA and proceed.
It remains uncertain why up to 30% of transfusions continue to occur outside of recommended guidelines in spite of interruptive prompts. This study demonstrates a general approach to secondary use of clinical data from the EMR toward understanding provider behavior, specifically by analyzing free‐text comments linked to transfusion override behavior and identifying the type of providers interacting with the BPAs.
MATERIALS AND METHODS
At Stanford University Hospital, a 447‐bed academic tertiary care center servicing adult patients, clinicians order blood transfusions through an EMR+CPOE system. When an order for red blood cell transfusion is attempted, the EMR evaluates the patient chart for specific criteria based on previously published guidelines.[18] Specifically, the BPA will review the last recorded Hgb value and trigger if the Hgb is >8, or if the Hgb is >7 and there is no concurrent EMR problem‐list entry related to acute coronary syndrome or acute hemorrhage. Once the blood transfusion BPA triggers, the ordering provider is presented with an interruptive prompt reminding them of best practice guidelines and the 3 most recent Hgb values for the patient.[16] From there, the provider may either abort the transfusion or override the BPA and proceed. Overrides require the provider to select a reason from a predefined list of institutionally accepted transfusion indications including acute bleeding, acute coronary syndrome and Hgb <8, and postoperative cardiothoracic surgery and Hgb <8. If none of the predefined override reasons are selected, the provider simply selects other, with the option of a free‐text comment to elaborate their rationale.
Data from provider interactions with the BPA were collected from the EMR across all inpatient wards for 8 months after the implementation period. Data collected from each interaction included the patient identifier, alert description, action taken, ordering provider identifier, ordering provider type (job title), optional comments for overriding the BPA, and date and time.
The free‐text override comments were independently reviewed by 2 licensed physicians, tagging them into a set of general categories by iterative inductive analysis of the comment content. Individual comments were allowed multiple possible category tags (eg, coronary artery disease and symptomatic). The initial tagging process was expedited by isolating common keywords in the override comments and assigning likely category tags to each, as in Table 2. The 2 physician reviewers then manually inspected all comments with the option to revise the initial category tagging to ensure validity. Many category tags occurred sporadically and were aggregated into more general categories, such as hematologic disorder (includes myelodysplastic syndrome, myelofibrosis, multiple myeloma, sickle cell, thalassemia, Waldenstrom's), symptomatic (includes fatigue, lightheaded, short of breath), and per other medical doctor [MD] (includes any other physician direction, primarily specialty consultation services).
To assess the inter‐rater agreement of this category tagging between the 2 reviewers, a confusion matrix similar to the example in Table 1 was setup for each tag used. Several agreement statistics are calculated based on the confusion matrix, including the positive agreement rate (Pa+) and Cohen's kappa statistic (). Kappa statistic values range from 1 to +1, with values <0 indicating no agreement and values >0.8 indicating near perfect agreement.[19] To reject the null hypothesis that the 2 reviewers could have independently arrived at their similar tagging assignments by chance, a 2 test was applied for each confusion matrix, with Yates' correction to avoid overestimating statistical significance given the low rates of inter‐rater disagreement.[20]
Reviewer 1 Tags "Surgery" | ||||
---|---|---|---|---|
Yes | No | Total | ||
| ||||
Reviewer 2 Tags "Surgery" | Yes | 143 | 11 | 154 |
No | 5 | 820 | 825 | |
Total | 148 | 831 | 979 |
Category Tag | Keyword | Keyword Count |
---|---|---|
| ||
Hgb 78 | 7.1, 7.2, 7.8, 7.9, 8, <8 | 360 |
BMT | BMT | 359 |
Symptomatic | Symptomatic | 187 |
Surgery | Postop, post‐op, surgery, surgical | 176 |
Dropping Hgb | Down, drop, dropping | 117 |
Chemotherapy | Chemo, chemotherapy | 88 |
Per other MD | Per | 87 |
Transplant | Transplant | 70 |
Cardiac | Cardiac | 66 |
Bleeding | Bleeding | 65 |
Procedure | Procedure | 65 |
Hgb <7 | 7 | 58 |
Hypotension | Hypotension | 51 |
Protocol | Protocol | 51 |
Cirrhosis | Liver | 50 |
Imminent discharge | Discharge | 49 |
Leukemia, acute | AML | 44 |
Cancer | Cancer | 37 |
Sepsis | Sepsis | 32 |
Tachycardia | Tachycardia | 28 |
RESULTS
During the data collection period from January 1, 2011 to August 31, 2012, the blood transfusion BPA fired in 11,791 instances, of which 10,642 recorded sufficient data for analysis (Figure 1). The ordering provider proceeded to override the BPA and continued with transfusion in 98% of cases (10,442/10,642). Acute bleeding" was the most common structured response (34%). The majority of BPA overrides used the general purpose other structured response option accounting for 56% (5886/10,442) of override responses, of which 37% (2185/5886) entered a free‐text comment elaborating the override reason. With 3701 nonresponders (other overrides with no free‐text comment), the overall response rate was 65% (6941/10,642).

With a handful of free‐text comments included with structured override responses (eg, 28 acute bleeding overrides included additional comment from the provider), a total of 2216 override comments were available for analysis. Using an initial selection of keyword‐tag associations, as in Table 2, 95% (2104/2216) of the override comments had a preliminary category tagging assigned. After manual review and revision by the first physician reviewer, 74% (1633/2216) of the comments retained their automated tags, whereas 26% (583/2216) were updated based on the reviewer's assessment of validity. This included 112 comments lacking automated tags the reviewer manually added, as well as 471 comments with automated tags revised by the reviewer.
The most common override category tags are presented in Figure 2 and Figure 3 for BPAs triggered in response to blood transfusions ordered for patients with Hgb 78 and Hgb >8, respectively. The agreed+ percentages correspond to the number of comments where the 2 physician reviewers both assigned the respective category tag (Pa+), whereas the disagreed percentages correspond to comments where the reviewers differed (Pd=1‐Pa). By Yates' corrected 2 analysis, P was <1010 for independence between reviewer tag assignments for all tags assessed. Kappa statistics are reported in the figures to describe inter‐rater agreement.


Resident physicians were the primary ordering provider group, accounting for approximately 55% (5863/10,642) of BPA interactions, followed by registered nurses, fellows, and attending physicians.
DISCUSSION
Prior work has established that an interruptive BPA to provide decision support against inappropriate blood transfusions can drive a significant and sustained reduction in unnecessary transfusions,[16] especially when satisfying the primary features of effective decision support.[14] The quantity of transfusions directly aborted by the BPA (only 2% in this case) does not nearly account for the total observed reductions in transfusions, suggesting that the BPA yields an indirect teaching effect over time beyond direct interruption. In other words, once a user has been interrupted by the BPA several times, they will be discouraged from even attempting to order inappropriate blood transfusions in the future.
Despite the improvements above, there remains a substantial fraction (up to 30%) of blood transfusions occurring outside of recommended guidelines where providers specifically override the BPA prompt.[21] This work is the first structured analysis of such BPA override behavior by generalizable methods of EMR data analysis to guide further improvements.
Analysis of the override behavior focused primarily on the free‐text comments explaining provider rationales for overriding the BPA. These comments were categorized by 2 physician reviewers, with P<1010 for all category tags, rejecting the null hypothesis that the 2 reviewers could have independently arrived at their similar category tags by chance. Further assessment of inter‐rater agreement was generally excellent, with >0.8 in the majority of cases. The remaining cases (ie, Hgb 78, per other MD, anemia, cardiac) still had substantial agreement, with >0.6. These disagreements almost universally occurred when a reviewer assigned a subset of the category tags assigned by the other reviewer. For example, 1 reviewer may tag a comment bone marrow transplant (BMT) patient with Hgb 7.2 with BMT and Hgb 78, whereas the other would only cite BMT.
Figure 2 and Figure 3 highlight the varied categories of responses, with most categories comprising <4% of the available responses. Among the most common override reasons are structured protocols for specialty services, as in the stem cell transplant service, whose protocol recommends transfusing blood when Hgb <8 rather than Hgb <7. In these cases, the BPA is unlikely to change protocolized behavior, thus overall workflow would likely be improved by adding a structured BPA override option for these protocols.
Analysis of the override comments did expose some relatively common and questionable transfusion practices, including perioperative and periprocedural transfusions, as well as anticipation of imminent discharge. Prior studies indicate that transfusions in anticipation of surgical or procedural intervention provide no benefit compared to responding to blood requirements intraoperatively as needed,[3, 22, 23] and imminent discharge of a patient is not a well‐recognized reason to transfuse outside of guidelines. The identification of these questionable and relatively common practices identifies opportunities for targeted education and training campaigns.
Symptomatic anemia was 1 of the more commonly cited BPA override reasons with a fraction providing a specific symptom such as fatigue, lightheadedness, or shortness of breath. Although the pervasiveness of this rationale may speak to adding it as a structured BPA override option, the nonspecific, subjective, and nonevidence‐based nature of symptom‐driven blood transfusions suggests that ongoing interruptive BPA prompts can still be useful to remind providers of the risks and guideline‐based approaches to such cases.
Limitations of the analysis are revealed as a fraction of BPA events did not fully record all relevant data, preventing proper analysis. Override comments suggest the BPA was triggering inappropriately for patients appropriately below the recommended transfusion threshold of Hgb <7, assuming provider free‐textentered values were accurate. Review of these cases showed some variability, such as when providers based their transfusion decision on a hematocrit of 20 rather than a Hgb of 7. Many comments also stated nonthreshold Hgb values, such as Hgb 7.2, seeming to imply that the value was close enough to the recommended threshold to justify overriding the transfusion prompt.
The most significant limitation of this study is the substantial fraction of nonresponder BPA transfusion overrides with a nonspecific other reason and no text commentary, comprising 34% (3670/10,642) of all BPA interactions and 62% (3670/5886) of all other overrides. Although the BPA is easily overridden by design to avoid workflow disruption that could compromise the priority of patient care, the nonresponses raise concern for skewed interpretation of the override data. General studies in survey responses provide reassurance that lower response rates do not necessarily indicate response bias,[24] with response rates as low as 25% yielding results statistically indistinguishable from more rigorous methods achieving >50% response rates.[25] In this specific case, response bias is better characterized by comparing ordering provider characteristics for the other overrides with and without free‐text comments. Specifically, Figure 4 shows the distribution of other overrides by provider type (job title) and provider home department (where available from physician department registries), separated by whether a free‐text comment was left. For each sub‐group, a 2 analysis compared the observed versus expected proportion of providers leaving comments based on the null hypothesis that leaving a comment was independent of membership in the subgroup. Similar proportions with nonsignificant P values suggest against significant response bias for most subgroups, but the data do indicate that this work likely under‐represents the opinion of fellows, physician assistants, and neurosurgeons, while slightly over‐representing the opinion of medicine, general surgery, and obstetrics/gynecology practitioners. Given that the under‐represented groups overall constitute a small minority of the total BPA interactions, this work should still be generalizable to the majority of transfusion behavior.

Further review of the ordering provider type (job title) distribution indicates that the vast majority of providers who actually interact with BPAs in this academic hospital are resident physicians. Similarly notable is that 25% of BPAs trigger for registered nurses. Upon review of hospital practices, we confirmed that nurses can enter transfusion orders on behalf of MD cosigners, generally in the context of a verbal order or routine treatment protocol, most notably on the stem cell transplant service. The prevalence of resident, nurse, nurse practitioner, and physician assistant order entry overall indicates that the providers encountering the BPA often do not have the negotiating power to accept or override the prompts, specifically defying the meaningful use goal of decision‐making providers directly interacting with CPOE and decision support prompts.[26]
The theoretical intelligence of the BPA not to trigger in well‐accepted cases of transfusion, where acute bleeding is occurring based on the presence of bleeding related items in the patient's problem list, is demonstrated to be limited. Acute bleeding represented the most common structured override response. This is likely multifactorial, but is largely the result of inconsistent usage of the patient problem lists that the BPA would depend upon. Another commonly cited override explanation was for a dropping Hgb without a specific bleeding source. This could point toward the BPA triggering an algorithm incorporating the last several Hgb values to assess the trajectory. Even then, however, guidelines would advocate holding transfusion and proceeding with serial monitoring of Hgb levels until an accepted transfusion threshold was actually breached.
This analysis demonstrates a general approach to secondary analysis of EMR data, in this case to provide insight into the specific question of why providers continue to order costly, unnecessary, and potentially harmful blood transfusions in spite of an interruptive BPA CDS tool. Limitations of the BPA are now better understood, including technical aspects of accounting for all decision‐making data, the frequency of nonresponse for override rationale, and that the providers interacting with the BPAs often do not have the negotiating power to change ordering behavior. The analysis recognizes protocolized behaviors that should be integrated into the CDS algorithms, and specification of symptomatic anemia as a common albeit subjective indication for blood transfusion. A wide swath of individually uncommon rationales drive transfusion override behavior, motivating further EMR‐based analysis to more efficiently recognize common scenarios (eg, perioperative/procedural, imminent discharge) for directed education and training interventions than can be achieved by conventional chart review.
Acknowledgements
The authors thank Sylvia Bereknyei for consultation on qualitative analysis methods, C.J. Garst for providing the dataset, David Iberri for contributing to early manuscript drafts, Paul Maggio for designing the original BPA, and Debra Green and Brett Toensing for providing staff department registries.
Disclosure: Nothing to report.
© 2014 Society of Hospital Medicine
Inhibitor gets accelerated approval for PTCL
The US Food and Drug Administration (FDA) has granted accelerated approval for belinostat (Beleodaq) to treat relapsed or refractory peripheral T-cell lymphoma (PTCL).
Belinostat is a histone deacetylase inhibitor with antineoplastic activity. The drug works by inhibiting tumor cell proliferation, inducing apoptosis, promoting cellular differentiation, and inhibiting angiogenesis.
The FDA’s accelerated approval program allows for approval of a drug based on surrogate or intermediate endpoints reasonably likely to predict clinical benefit for patients with serious conditions with unmet medical needs.
Drugs receiving accelerated approval are subject to confirmatory trials verifying clinical benefit.
The FDA granted belinostat accelerated approval based on results of a phase 2 trial, which included 129 patients with relapsed or refractory PTCL. All patients received belinostat until disease progression or unacceptable toxicity.
About 26% of patients achieved a complete or partial response. The most common side effects were nausea, fatigue, pyrexia, anemia, and vomiting.
“[Belinostat] is the third drug that has been approved since 2009 for the treatment of peripheral T-cell lymphoma,” said Richard Pazdur, MD, director of the Office of Hematology and Oncology Products in the FDA’s Center for Drug Evaluation and Research.
The FDA granted accelerated approval to pralatrexate (Folotyn) in 2009 for use in patients with relapsed or refractory PTCL and romidepsin (Istodax) in 2011 for PTCL patients who had received at least 1 prior therapy.
Beleodaq and Folotyn are marketed by Spectrum Pharmaceuticals, Inc., based in Henderson, Nevada. Istodax is marketed by Celgene Corporation based in Summit, New Jersey.
The US Food and Drug Administration (FDA) has granted accelerated approval for belinostat (Beleodaq) to treat relapsed or refractory peripheral T-cell lymphoma (PTCL).
Belinostat is a histone deacetylase inhibitor with antineoplastic activity. The drug works by inhibiting tumor cell proliferation, inducing apoptosis, promoting cellular differentiation, and inhibiting angiogenesis.
The FDA’s accelerated approval program allows for approval of a drug based on surrogate or intermediate endpoints reasonably likely to predict clinical benefit for patients with serious conditions with unmet medical needs.
Drugs receiving accelerated approval are subject to confirmatory trials verifying clinical benefit.
The FDA granted belinostat accelerated approval based on results of a phase 2 trial, which included 129 patients with relapsed or refractory PTCL. All patients received belinostat until disease progression or unacceptable toxicity.
About 26% of patients achieved a complete or partial response. The most common side effects were nausea, fatigue, pyrexia, anemia, and vomiting.
“[Belinostat] is the third drug that has been approved since 2009 for the treatment of peripheral T-cell lymphoma,” said Richard Pazdur, MD, director of the Office of Hematology and Oncology Products in the FDA’s Center for Drug Evaluation and Research.
The FDA granted accelerated approval to pralatrexate (Folotyn) in 2009 for use in patients with relapsed or refractory PTCL and romidepsin (Istodax) in 2011 for PTCL patients who had received at least 1 prior therapy.
Beleodaq and Folotyn are marketed by Spectrum Pharmaceuticals, Inc., based in Henderson, Nevada. Istodax is marketed by Celgene Corporation based in Summit, New Jersey.
The US Food and Drug Administration (FDA) has granted accelerated approval for belinostat (Beleodaq) to treat relapsed or refractory peripheral T-cell lymphoma (PTCL).
Belinostat is a histone deacetylase inhibitor with antineoplastic activity. The drug works by inhibiting tumor cell proliferation, inducing apoptosis, promoting cellular differentiation, and inhibiting angiogenesis.
The FDA’s accelerated approval program allows for approval of a drug based on surrogate or intermediate endpoints reasonably likely to predict clinical benefit for patients with serious conditions with unmet medical needs.
Drugs receiving accelerated approval are subject to confirmatory trials verifying clinical benefit.
The FDA granted belinostat accelerated approval based on results of a phase 2 trial, which included 129 patients with relapsed or refractory PTCL. All patients received belinostat until disease progression or unacceptable toxicity.
About 26% of patients achieved a complete or partial response. The most common side effects were nausea, fatigue, pyrexia, anemia, and vomiting.
“[Belinostat] is the third drug that has been approved since 2009 for the treatment of peripheral T-cell lymphoma,” said Richard Pazdur, MD, director of the Office of Hematology and Oncology Products in the FDA’s Center for Drug Evaluation and Research.
The FDA granted accelerated approval to pralatrexate (Folotyn) in 2009 for use in patients with relapsed or refractory PTCL and romidepsin (Istodax) in 2011 for PTCL patients who had received at least 1 prior therapy.
Beleodaq and Folotyn are marketed by Spectrum Pharmaceuticals, Inc., based in Henderson, Nevada. Istodax is marketed by Celgene Corporation based in Summit, New Jersey.
New compound blocks essential enzyme
Credit: Peter H. Seeberger
A novel compound can inhibit an enzyme that is essential for malaria parasite survival, according to research published in PLOS Biology.
Researchers believe that creating this compound, WEHI-916, is the first step toward developing a new class of antimalarial drugs that could cure and prevent malaria infections caused by all species of the parasite, including those resistant to existing drugs.
The group developed WEHI-916 to block the enzyme Plasmepsin V. They previously showed Plasmepsin V is responsible for controlling the transport of proteins in and out of the malaria parasite.
Now, they’ve used WEHI-916 to prove the importance of Plasmepsin V to the survival of both Plasmodium vivax and Plasmodium falciparum.
“Researchers, including us, had been trying, without success, to learn more about Plasmepsin V using standard genetic techniques,” said study author Just Boddey, PhD, of The Walter and Eliza Hall Institute of Medical Research in Parkville, Victoria, Australia.
“Our idea was to create a drug-like compound that would block Plasmepsin V so we could investigate its importance. We found that blocking Plasmepsin V kills malaria parasites and delivered a new and effective potential drug at the same time.”
Plasmepsin V was an ideal drug target because its inhibition effectively halted the transport of hundreds of malaria proteins, Dr Boddey noted.
“The Plasmodium parasite needs to produce and deliver over 300 different proteins to the red blood cell to survive in the body and hide from the host’s immune system,” he said. “Instead of targeting individual proteins, we can block Plasmepsin V and prevent all of those proteins from leaving the parasite.”
The researchers believe these findings could aid the development of drugs that are effective in curing malaria caused by all 5 species of Plasmodium parasite.
“Our study has shown that Plasmepsin V is a key enzyme in [P vivax and P falciparum], and WEHI-916 can inhibit Plasmepsin V isolated from both of them,” said study author Brad Sleebs, PhD, also of The Walter and Eliza Hall Institute.
“Not only does this compound enable us to prove Plasmepsin V is an excellent drug target, it is a starting point for a research program that could lead to a new class of antimalarial drugs.”
Now, the researchers have turned their attention to developing WEHI-916 and related compounds for human use.
“We are now examining in our insectary whether Plasmepsin V could be a target during other stages of the malaria lifecycle,” Dr Boddey said. “The enzyme is present in the parasites that first infect humans in the liver, as well as in parasite forms that exit humans and infect mosquitoes.”
“If WEHI-916 kills the parasite during these stages as well, it will mean any drugs that target Plasmepsin V can be used as a preventative as well as a cure.”
Credit: Peter H. Seeberger
A novel compound can inhibit an enzyme that is essential for malaria parasite survival, according to research published in PLOS Biology.
Researchers believe that creating this compound, WEHI-916, is the first step toward developing a new class of antimalarial drugs that could cure and prevent malaria infections caused by all species of the parasite, including those resistant to existing drugs.
The group developed WEHI-916 to block the enzyme Plasmepsin V. They previously showed Plasmepsin V is responsible for controlling the transport of proteins in and out of the malaria parasite.
Now, they’ve used WEHI-916 to prove the importance of Plasmepsin V to the survival of both Plasmodium vivax and Plasmodium falciparum.
“Researchers, including us, had been trying, without success, to learn more about Plasmepsin V using standard genetic techniques,” said study author Just Boddey, PhD, of The Walter and Eliza Hall Institute of Medical Research in Parkville, Victoria, Australia.
“Our idea was to create a drug-like compound that would block Plasmepsin V so we could investigate its importance. We found that blocking Plasmepsin V kills malaria parasites and delivered a new and effective potential drug at the same time.”
Plasmepsin V was an ideal drug target because its inhibition effectively halted the transport of hundreds of malaria proteins, Dr Boddey noted.
“The Plasmodium parasite needs to produce and deliver over 300 different proteins to the red blood cell to survive in the body and hide from the host’s immune system,” he said. “Instead of targeting individual proteins, we can block Plasmepsin V and prevent all of those proteins from leaving the parasite.”
The researchers believe these findings could aid the development of drugs that are effective in curing malaria caused by all 5 species of Plasmodium parasite.
“Our study has shown that Plasmepsin V is a key enzyme in [P vivax and P falciparum], and WEHI-916 can inhibit Plasmepsin V isolated from both of them,” said study author Brad Sleebs, PhD, also of The Walter and Eliza Hall Institute.
“Not only does this compound enable us to prove Plasmepsin V is an excellent drug target, it is a starting point for a research program that could lead to a new class of antimalarial drugs.”
Now, the researchers have turned their attention to developing WEHI-916 and related compounds for human use.
“We are now examining in our insectary whether Plasmepsin V could be a target during other stages of the malaria lifecycle,” Dr Boddey said. “The enzyme is present in the parasites that first infect humans in the liver, as well as in parasite forms that exit humans and infect mosquitoes.”
“If WEHI-916 kills the parasite during these stages as well, it will mean any drugs that target Plasmepsin V can be used as a preventative as well as a cure.”
Credit: Peter H. Seeberger
A novel compound can inhibit an enzyme that is essential for malaria parasite survival, according to research published in PLOS Biology.
Researchers believe that creating this compound, WEHI-916, is the first step toward developing a new class of antimalarial drugs that could cure and prevent malaria infections caused by all species of the parasite, including those resistant to existing drugs.
The group developed WEHI-916 to block the enzyme Plasmepsin V. They previously showed Plasmepsin V is responsible for controlling the transport of proteins in and out of the malaria parasite.
Now, they’ve used WEHI-916 to prove the importance of Plasmepsin V to the survival of both Plasmodium vivax and Plasmodium falciparum.
“Researchers, including us, had been trying, without success, to learn more about Plasmepsin V using standard genetic techniques,” said study author Just Boddey, PhD, of The Walter and Eliza Hall Institute of Medical Research in Parkville, Victoria, Australia.
“Our idea was to create a drug-like compound that would block Plasmepsin V so we could investigate its importance. We found that blocking Plasmepsin V kills malaria parasites and delivered a new and effective potential drug at the same time.”
Plasmepsin V was an ideal drug target because its inhibition effectively halted the transport of hundreds of malaria proteins, Dr Boddey noted.
“The Plasmodium parasite needs to produce and deliver over 300 different proteins to the red blood cell to survive in the body and hide from the host’s immune system,” he said. “Instead of targeting individual proteins, we can block Plasmepsin V and prevent all of those proteins from leaving the parasite.”
The researchers believe these findings could aid the development of drugs that are effective in curing malaria caused by all 5 species of Plasmodium parasite.
“Our study has shown that Plasmepsin V is a key enzyme in [P vivax and P falciparum], and WEHI-916 can inhibit Plasmepsin V isolated from both of them,” said study author Brad Sleebs, PhD, also of The Walter and Eliza Hall Institute.
“Not only does this compound enable us to prove Plasmepsin V is an excellent drug target, it is a starting point for a research program that could lead to a new class of antimalarial drugs.”
Now, the researchers have turned their attention to developing WEHI-916 and related compounds for human use.
“We are now examining in our insectary whether Plasmepsin V could be a target during other stages of the malaria lifecycle,” Dr Boddey said. “The enzyme is present in the parasites that first infect humans in the liver, as well as in parasite forms that exit humans and infect mosquitoes.”
“If WEHI-916 kills the parasite during these stages as well, it will mean any drugs that target Plasmepsin V can be used as a preventative as well as a cure.”