From Case Western Reserve University, MetroHealth Medical Center, Cleveland, OH.

Abstract

• Objective: To describe a computer-assisted process for reducing the number of patients discharged from the emergency department with abnormal vital signs.
• Methods: We devised a best practice alert in the Epic electronic medical record that triggers when the clinician attempts to print an after visit summary (discharge paperwork) at the time of discharge from the emergency department.
• Results: We saw no change in the percentage of patients discharged with elevated blood pressures, consistent with national recommendations. Removing that category of patients, we saw a decrease in the percentage of patients discharged with abnormal vital signs, primarily driven by a decrease in the percentage of patients discharged with tachycardia.
• Conclusion: A computer-assisted process can reduce the percentage of patients discharged with abnormal vital signs. Since based on national recommendations ED physicians do not address most elevated blood pressures in the ED, hypertension should not trigger an alert.

Abnormal vital signs in the emergency department (ED) have been associated with adverse outcomes [1,2]. While most patients discharged from the ED do well, some studies have found that the death rate within days to weeks post–ED discharge may be as high as 200 per 100,000 visits, although other studies have found a much lower rate [1]. A study by Sklar et al, although not specifically focused on vital signs at discharge, found that unexpected death within 7 days of ED discharge occurred at a rate of 30 per 100,000 patients. Abnormal vital signs, most commonly tachycardia, were present in 83% of cases [2].

In busy EDs, the combination of patient volume, frequent interruptions, and the intensity of tasks can result in deficiencies in vital sign monitoring [3–5] as well as  abnormal vital signs not being recognized by the clinician at the time of patient discharge [6]. The importance of addressing this quality problem has been recognized. Prior efforts to address the problem have included nurses using manual methods to alert the physician to the presence of abnormal vital signs at the time of discharge [7]. Recommendations have been made to use electronic medical record (EMR) functions for prospectively addressing the problem of ED discharge with abnormal vital signs [8]. The utility of the EMR to identify potentially septic patients earlier and reduce mortality from sepsis via an algorithm that incorporated vital signs and other clinical crieria has been demonstrated [9,10]. In addition, automated vital signs advisories have been associated with increased survival on general hospital wards [11].

An adverse event that occurred at our institution prompted us to review this issue for our ED. We designed an EMR-assisted intervention to reduce the rate of patients discharged from the ED with abnormal vital signs.

Methods

Setting

Our ED is a busy, urban, Level 1 trauma center within a teaching facility. It sees over 100,000 patients per year and is segmented into resuscitation, high acuity, moderate acuity, and fast tract areas, in addition to the observation unit. Our organization uses the Epic (Madison, Wisconsin) electronic health record, which we have been using for over a decade.

Discharge Instructions—Old Process

In our ED, providers, attending physicians, residents and advance practice nurses enter and print their own discharge instructions, which are given to nursing staff to review with patients. Prior to the project, nurses were expected to notify a physician if they thought a vital sign was abnormal. Each nurse made independent decisions on what constituted a vital sign abnormality based on the patient’s condition and could communicate that to the provider at their discretion prior to discharge. This process created inconsistencies in care.

Development of Alert

We created an alert that appears within the provider workflow at the time the provider attempts to print discharge instructions. Based on literature review and operational leadership consensus, we set the parameters for abnormal vital signs (Table 1). We chose parameters to identify abnormalities important to 

The alert displays when a user attempts to print discharge instructions on a patient whose last recorded vital signs are not all normal. The display informs that there are abnormal vital signs (Figure). Upon display of the alert, the user can click on the message, which would take them to the vital sign entry activity in the EMR, or they can proceed with printing by clicking the print button (not visible in the Figure). The alert is not a forcing function; the user can proceed with printing the discharge instructions without addressing the abnormality that triggered the alert.

Pre-Post Evaluation

We would have liked to have determined how often the abnormal vital signs alert triggered, how it was responded to, and whether the patient was subsequently discharged with normal vital signs; however, our system does not record these events. Instead, we used the system to compare the percentage of adult patients who were discharged with abnormal vital signs for 2 time periods: the period prior to our December 2014 implementation (1 Oct to 1 Dec 2014) and the post implementation period (15 Dec 2014 to 15 Feb 2015). Our presumption was that the use of the alert system would reduce the percentage of patients discharged with abnormal vital signs, including an abnormal pulse oximetry.

To conduct our analysis, we identified adult patients seen during the 2 time periods. We eliminated those patients who died, left without being seen, eloped, were admitted or were transferred to other institutions. This resulted in 3664 patients, with 2179 in the pre-implementation group and 1485 in the post-implementation group. The higher volume in the pre group reflects the early occurrence of influenza season in our area during the study period, along with our generally busier time in late fall compared to winter.

The analysis was performed as a likelihood ratio chi-square analysis using SAS (Cary, NC) software.

Results

The analysis demonstrated that physicians were, by and large, following recommendations consistent with policies of the American College of Emergency Physicians regarding the management of elevated blood pressures, which do not mandate that patients with asymptomatic elevations of blood pressure receive medical intervention in the ED [12]. In our analysis, the percentage of patients discharged with elevated blood pressures actually increased from 7.5% to 9.9% following the intervention. Importantly, however, the percentage of patients discharged with low blood pressures decreased from 6.9% to 5.0% (P < 0.01).Tthe percent of patients discharged with an elevated heart rate, decreased from 58% in the pre alert group to 42% in the post alert group (P < 0.02). 

Discussion

In our study, we used features of the EMR prospectively to affect discharge and then used the database functions of the EMR to assess the effectiveness of those efforts. Previous studies that have looked at the incidence of abnormal vital signs at discharge have been manual, retrospective reviews of records. We are not aware of any studies reporting the results of introducing an EMR alert to prospectively identify patients with abnormal vital signs prior to discharge

While we found that this intervention was successful in reducing clinically relevant abnormal vital signs at discharge, we have realized that the elevated blood pressure alert was unnecessary and we have eliminated it from the programming. We will revisit our strategy to determine if further reducing the high blood pressure alerts can lead to greater improvements in reducing the percentage of patients discharged with abnormal vital signs.

Future plans include a review of the re-visit or hospitalization rate for patients discharged with abnormal vital signs. A companion study evaluating a similar approach to the care of children is under consideration. We are also considering including a field in the EMR for the clinician to document why they discharged a patient with abnormal vital signs.

Corresponding author: Jonathan E. Siff, MD 2500 MetroHealth Drive BG3-65 Cleveland, Ohio 44109 [email protected].

Financial disclosures: None.

From Case Western Reserve University, MetroHealth Medical Center, Cleveland, OH.

Abstract

• Objective: To describe a computer-assisted process for reducing the number of patients discharged from the emergency department with abnormal vital signs.
• Methods: We devised a best practice alert in the Epic electronic medical record that triggers when the clinician attempts to print an after visit summary (discharge paperwork) at the time of discharge from the emergency department.
• Results: We saw no change in the percentage of patients discharged with elevated blood pressures, consistent with national recommendations. Removing that category of patients, we saw a decrease in the percentage of patients discharged with abnormal vital signs, primarily driven by a decrease in the percentage of patients discharged with tachycardia.
• Conclusion: A computer-assisted process can reduce the percentage of patients discharged with abnormal vital signs. Since based on national recommendations ED physicians do not address most elevated blood pressures in the ED, hypertension should not trigger an alert.

Abnormal vital signs in the emergency department (ED) have been associated with adverse outcomes [1,2]. While most patients discharged from the ED do well, some studies have found that the death rate within days to weeks post–ED discharge may be as high as 200 per 100,000 visits, although other studies have found a much lower rate [1]. A study by Sklar et al, although not specifically focused on vital signs at discharge, found that unexpected death within 7 days of ED discharge occurred at a rate of 30 per 100,000 patients. Abnormal vital signs, most commonly tachycardia, were present in 83% of cases [2].

In busy EDs, the combination of patient volume, frequent interruptions, and the intensity of tasks can result in deficiencies in vital sign monitoring [3–5] as well as  abnormal vital signs not being recognized by the clinician at the time of patient discharge [6]. The importance of addressing this quality problem has been recognized. Prior efforts to address the problem have included nurses using manual methods to alert the physician to the presence of abnormal vital signs at the time of discharge [7]. Recommendations have been made to use electronic medical record (EMR) functions for prospectively addressing the problem of ED discharge with abnormal vital signs [8]. The utility of the EMR to identify potentially septic patients earlier and reduce mortality from sepsis via an algorithm that incorporated vital signs and other clinical crieria has been demonstrated [9,10]. In addition, automated vital signs advisories have been associated with increased survival on general hospital wards [11].

An adverse event that occurred at our institution prompted us to review this issue for our ED. We designed an EMR-assisted intervention to reduce the rate of patients discharged from the ED with abnormal vital signs.

Methods

Setting

Our ED is a busy, urban, Level 1 trauma center within a teaching facility. It sees over 100,000 patients per year and is segmented into resuscitation, high acuity, moderate acuity, and fast tract areas, in addition to the observation unit. Our organization uses the Epic (Madison, Wisconsin) electronic health record, which we have been using for over a decade.

Discharge Instructions—Old Process

In our ED, providers, attending physicians, residents and advance practice nurses enter and print their own discharge instructions, which are given to nursing staff to review with patients. Prior to the project, nurses were expected to notify a physician if they thought a vital sign was abnormal. Each nurse made independent decisions on what constituted a vital sign abnormality based on the patient’s condition and could communicate that to the provider at their discretion prior to discharge. This process created inconsistencies in care.

Development of Alert

We created an alert that appears within the provider workflow at the time the provider attempts to print discharge instructions. Based on literature review and operational leadership consensus, we set the parameters for abnormal vital signs (Table 1). We chose parameters to identify abnormalities important to 

The alert displays when a user attempts to print discharge instructions on a patient whose last recorded vital signs are not all normal. The display informs that there are abnormal vital signs (Figure). Upon display of the alert, the user can click on the message, which would take them to the vital sign entry activity in the EMR, or they can proceed with printing by clicking the print button (not visible in the Figure). The alert is not a forcing function; the user can proceed with printing the discharge instructions without addressing the abnormality that triggered the alert.

Pre-Post Evaluation

We would have liked to have determined how often the abnormal vital signs alert triggered, how it was responded to, and whether the patient was subsequently discharged with normal vital signs; however, our system does not record these events. Instead, we used the system to compare the percentage of adult patients who were discharged with abnormal vital signs for 2 time periods: the period prior to our December 2014 implementation (1 Oct to 1 Dec 2014) and the post implementation period (15 Dec 2014 to 15 Feb 2015). Our presumption was that the use of the alert system would reduce the percentage of patients discharged with abnormal vital signs, including an abnormal pulse oximetry.

To conduct our analysis, we identified adult patients seen during the 2 time periods. We eliminated those patients who died, left without being seen, eloped, were admitted or were transferred to other institutions. This resulted in 3664 patients, with 2179 in the pre-implementation group and 1485 in the post-implementation group. The higher volume in the pre group reflects the early occurrence of influenza season in our area during the study period, along with our generally busier time in late fall compared to winter.

The analysis was performed as a likelihood ratio chi-square analysis using SAS (Cary, NC) software.

Results

The analysis demonstrated that physicians were, by and large, following recommendations consistent with policies of the American College of Emergency Physicians regarding the management of elevated blood pressures, which do not mandate that patients with asymptomatic elevations of blood pressure receive medical intervention in the ED [12]. In our analysis, the percentage of patients discharged with elevated blood pressures actually increased from 7.5% to 9.9% following the intervention. Importantly, however, the percentage of patients discharged with low blood pressures decreased from 6.9% to 5.0% (P < 0.01).Tthe percent of patients discharged with an elevated heart rate, decreased from 58% in the pre alert group to 42% in the post alert group (P < 0.02). 

Discussion

In our study, we used features of the EMR prospectively to affect discharge and then used the database functions of the EMR to assess the effectiveness of those efforts. Previous studies that have looked at the incidence of abnormal vital signs at discharge have been manual, retrospective reviews of records. We are not aware of any studies reporting the results of introducing an EMR alert to prospectively identify patients with abnormal vital signs prior to discharge

While we found that this intervention was successful in reducing clinically relevant abnormal vital signs at discharge, we have realized that the elevated blood pressure alert was unnecessary and we have eliminated it from the programming. We will revisit our strategy to determine if further reducing the high blood pressure alerts can lead to greater improvements in reducing the percentage of patients discharged with abnormal vital signs.

Future plans include a review of the re-visit or hospitalization rate for patients discharged with abnormal vital signs. A companion study evaluating a similar approach to the care of children is under consideration. We are also considering including a field in the EMR for the clinician to document why they discharged a patient with abnormal vital signs.

Corresponding author: Jonathan E. Siff, MD 2500 MetroHealth Drive BG3-65 Cleveland, Ohio 44109 [email protected].

Financial disclosures: None.

From Case Western Reserve University, MetroHealth Medical Center, Cleveland, OH.

Abstract

• Objective: To describe a computer-assisted process for reducing the number of patients discharged from the emergency department with abnormal vital signs.
• Methods: We devised a best practice alert in the Epic electronic medical record that triggers when the clinician attempts to print an after visit summary (discharge paperwork) at the time of discharge from the emergency department.
• Results: We saw no change in the percentage of patients discharged with elevated blood pressures, consistent with national recommendations. Removing that category of patients, we saw a decrease in the percentage of patients discharged with abnormal vital signs, primarily driven by a decrease in the percentage of patients discharged with tachycardia.
• Conclusion: A computer-assisted process can reduce the percentage of patients discharged with abnormal vital signs. Since based on national recommendations ED physicians do not address most elevated blood pressures in the ED, hypertension should not trigger an alert.

Abnormal vital signs in the emergency department (ED) have been associated with adverse outcomes [1,2]. While most patients discharged from the ED do well, some studies have found that the death rate within days to weeks post–ED discharge may be as high as 200 per 100,000 visits, although other studies have found a much lower rate [1]. A study by Sklar et al, although not specifically focused on vital signs at discharge, found that unexpected death within 7 days of ED discharge occurred at a rate of 30 per 100,000 patients. Abnormal vital signs, most commonly tachycardia, were present in 83% of cases [2].

In busy EDs, the combination of patient volume, frequent interruptions, and the intensity of tasks can result in deficiencies in vital sign monitoring [3–5] as well as  abnormal vital signs not being recognized by the clinician at the time of patient discharge [6]. The importance of addressing this quality problem has been recognized. Prior efforts to address the problem have included nurses using manual methods to alert the physician to the presence of abnormal vital signs at the time of discharge [7]. Recommendations have been made to use electronic medical record (EMR) functions for prospectively addressing the problem of ED discharge with abnormal vital signs [8]. The utility of the EMR to identify potentially septic patients earlier and reduce mortality from sepsis via an algorithm that incorporated vital signs and other clinical crieria has been demonstrated [9,10]. In addition, automated vital signs advisories have been associated with increased survival on general hospital wards [11].

An adverse event that occurred at our institution prompted us to review this issue for our ED. We designed an EMR-assisted intervention to reduce the rate of patients discharged from the ED with abnormal vital signs.

Methods

Setting

Our ED is a busy, urban, Level 1 trauma center within a teaching facility. It sees over 100,000 patients per year and is segmented into resuscitation, high acuity, moderate acuity, and fast tract areas, in addition to the observation unit. Our organization uses the Epic (Madison, Wisconsin) electronic health record, which we have been using for over a decade.

Discharge Instructions—Old Process

In our ED, providers, attending physicians, residents and advance practice nurses enter and print their own discharge instructions, which are given to nursing staff to review with patients. Prior to the project, nurses were expected to notify a physician if they thought a vital sign was abnormal. Each nurse made independent decisions on what constituted a vital sign abnormality based on the patient’s condition and could communicate that to the provider at their discretion prior to discharge. This process created inconsistencies in care.

Development of Alert

We created an alert that appears within the provider workflow at the time the provider attempts to print discharge instructions. Based on literature review and operational leadership consensus, we set the parameters for abnormal vital signs (Table 1). We chose parameters to identify abnormalities important to 

The alert displays when a user attempts to print discharge instructions on a patient whose last recorded vital signs are not all normal. The display informs that there are abnormal vital signs (Figure). Upon display of the alert, the user can click on the message, which would take them to the vital sign entry activity in the EMR, or they can proceed with printing by clicking the print button (not visible in the Figure). The alert is not a forcing function; the user can proceed with printing the discharge instructions without addressing the abnormality that triggered the alert.

Pre-Post Evaluation

We would have liked to have determined how often the abnormal vital signs alert triggered, how it was responded to, and whether the patient was subsequently discharged with normal vital signs; however, our system does not record these events. Instead, we used the system to compare the percentage of adult patients who were discharged with abnormal vital signs for 2 time periods: the period prior to our December 2014 implementation (1 Oct to 1 Dec 2014) and the post implementation period (15 Dec 2014 to 15 Feb 2015). Our presumption was that the use of the alert system would reduce the percentage of patients discharged with abnormal vital signs, including an abnormal pulse oximetry.

To conduct our analysis, we identified adult patients seen during the 2 time periods. We eliminated those patients who died, left without being seen, eloped, were admitted or were transferred to other institutions. This resulted in 3664 patients, with 2179 in the pre-implementation group and 1485 in the post-implementation group. The higher volume in the pre group reflects the early occurrence of influenza season in our area during the study period, along with our generally busier time in late fall compared to winter.

The analysis was performed as a likelihood ratio chi-square analysis using SAS (Cary, NC) software.

Results

The analysis demonstrated that physicians were, by and large, following recommendations consistent with policies of the American College of Emergency Physicians regarding the management of elevated blood pressures, which do not mandate that patients with asymptomatic elevations of blood pressure receive medical intervention in the ED [12]. In our analysis, the percentage of patients discharged with elevated blood pressures actually increased from 7.5% to 9.9% following the intervention. Importantly, however, the percentage of patients discharged with low blood pressures decreased from 6.9% to 5.0% (P < 0.01).Tthe percent of patients discharged with an elevated heart rate, decreased from 58% in the pre alert group to 42% in the post alert group (P < 0.02). 

Discussion

In our study, we used features of the EMR prospectively to affect discharge and then used the database functions of the EMR to assess the effectiveness of those efforts. Previous studies that have looked at the incidence of abnormal vital signs at discharge have been manual, retrospective reviews of records. We are not aware of any studies reporting the results of introducing an EMR alert to prospectively identify patients with abnormal vital signs prior to discharge

While we found that this intervention was successful in reducing clinically relevant abnormal vital signs at discharge, we have realized that the elevated blood pressure alert was unnecessary and we have eliminated it from the programming. We will revisit our strategy to determine if further reducing the high blood pressure alerts can lead to greater improvements in reducing the percentage of patients discharged with abnormal vital signs.

Future plans include a review of the re-visit or hospitalization rate for patients discharged with abnormal vital signs. A companion study evaluating a similar approach to the care of children is under consideration. We are also considering including a field in the EMR for the clinician to document why they discharged a patient with abnormal vital signs.

Corresponding author: Jonathan E. Siff, MD 2500 MetroHealth Drive BG3-65 Cleveland, Ohio 44109 [email protected].

Financial disclosures: None.

SALT LAKE CITY – Certain nonsurgical biomarkers appear to accurately identify chronic endometriosis, and might soon spare patients from years of misdiagnosis and the costs and burden of diagnostic surgery, according to experts at the annual meeting of the American Society for Reproductive Medicine.

Most notably, expression levels of three microRNAs, 125-b-5p, 451a, and 3613-5p, correctly distinguished patients with chronic endometriosis from healthy controls, said Hugh S. Taylor, MD, of Yale University in New Haven, Conn.

Patients may go up to 12 years and see five or more physicians before they are diagnosed. Clinicians tend to rely on surgical diagnosis, but “there is a reluctance to perform surgery unless there is severe disease,” he added. “The lack of nonsurgical biomarkers contributes significantly to delays in diagnosis and timely intervention.”

These concerns prompted Dr. Taylor and his associates to study microRNAs – the short, noncoding, functional RNAs that promote messenger RNA breakdown or repress its translation. MicroRNA expression varies by tissue type and disease status, and occurs in a variety of body fluids, giving them real potential as nonsurgical biomarkers, Dr. Taylor said. To examine their role in endometriosis, he and his associates performed microarray profiling and confirmatory quantitative real-time polymerase chain reaction testing of serum samples from 24 women with chronic endometriosis and 24 healthy women who served as controls (Fertil Steril. 2016 Aug;106[2]:402-9).

MicroRNA 125b-5p was upregulated the most in endometriosis patients and distinguished patients from controls with a “giant” area under the receiver operating characteristic curve value of 0.974, Dr. Taylor said. Remarkably, this value rose to 1 – meaning that sensitivity and specificity both were 100% – when the researchers added another upregulated microRNA (451a) and a downregulated microRNA (3613-5p) to the model. More work is underway to understand how a test for these microRNAs would perform in larger populations, Dr. Taylor said.

MicroRNAs also are likely to play functional roles in chronic endometriosis and may mediate treatment response, he noted. For example, the microRNA 125b-5p, which is upregulated in endometriosis, increases the expression of inflammatory cytokines and tumor necrosis factor alpha in macrophages, and the aromatase inhibitor letrozole, which reduces pelvic pain in the disease, increases the expression of let-7 microRNAs, with corresponding decreases in the migration of endometrial cells (Fertil Steril. 2016 Sep 1;106[3]:673-80). “Maybe these microRNAs are changing metabolism. Maybe they are changing immune cell activity,” Dr. Taylor said. “I think they are doing a lot more than sitting around waiting for us to discover them.”

None of the 24 patients with endometriosis in his study had taken oral contraceptives in the 3 months prior to serum sampling, Dr. Taylor noted. “We need to look at oral contraception as a potential confounder,” he acknowledged. “If something is independent of the menstrual cycle phase, that is much better than a marker that is dependent on cycle phase.”

Menstrual cycle phase and oral contraceptives are just two of many potential confounders of biomarkers in chronic endometriosis, according to Linda Giudice, MD, PhD, of the University of California, San Francisco. Disease severity, as well as the type, number, and location of lesions and the presence or absence of coexisting inflammatory disorders all can potentially affect the sensitivity and specificity of a marker, she said. Consequently, “there is no single biomarker for chronic endometriosis,” but there are several candidates besides microRNAs, she added. For example, studies show that menstrual blood is readily distinguishable from peripheral blood, and closely resembles the immune environment of the uterus. Another study found that urinary peptides distinguished patients with moderate to severe endometriosis from healthy controls, and mild disease from severe disease, with sensitivities and specificities ranging from 72% to 88% (Fertil Steril. 2011 Mar 15;95[4]:1261-6).

Other potential sources of diagnostic tests include the endometrial proteome, transcriptome, and methylome, as well as endometrial stem cells, Dr. Giudice said. But for now, surgical diagnosis remains the gold standard, and the World Endometriosis Research Foundation is working to homogenize recording of surgical phenotypic information and laparoscopic specimens to improve data quality, she added.

Dr. Taylor did not report funding sources. He disclosed financial ties to Pfizer, OvaScience AbbVie, Bayer, and Euroscreen. Dr. Giudice acknowledged support from the National Institutes of Health and the UCSF NIH Human Endometrial Tissue and DNA Bank. She disclosed ties to Merck, Pfizer, NextGen Jane, AbbVie, and Juniper Pharmaceuticals.

SALT LAKE CITY – Certain nonsurgical biomarkers appear to accurately identify chronic endometriosis, and might soon spare patients from years of misdiagnosis and the costs and burden of diagnostic surgery, according to experts at the annual meeting of the American Society for Reproductive Medicine.

Most notably, expression levels of three microRNAs, 125-b-5p, 451a, and 3613-5p, correctly distinguished patients with chronic endometriosis from healthy controls, said Hugh S. Taylor, MD, of Yale University in New Haven, Conn.

Patients may go up to 12 years and see five or more physicians before they are diagnosed. Clinicians tend to rely on surgical diagnosis, but “there is a reluctance to perform surgery unless there is severe disease,” he added. “The lack of nonsurgical biomarkers contributes significantly to delays in diagnosis and timely intervention.”

These concerns prompted Dr. Taylor and his associates to study microRNAs – the short, noncoding, functional RNAs that promote messenger RNA breakdown or repress its translation. MicroRNA expression varies by tissue type and disease status, and occurs in a variety of body fluids, giving them real potential as nonsurgical biomarkers, Dr. Taylor said. To examine their role in endometriosis, he and his associates performed microarray profiling and confirmatory quantitative real-time polymerase chain reaction testing of serum samples from 24 women with chronic endometriosis and 24 healthy women who served as controls (Fertil Steril. 2016 Aug;106[2]:402-9).

MicroRNA 125b-5p was upregulated the most in endometriosis patients and distinguished patients from controls with a “giant” area under the receiver operating characteristic curve value of 0.974, Dr. Taylor said. Remarkably, this value rose to 1 – meaning that sensitivity and specificity both were 100% – when the researchers added another upregulated microRNA (451a) and a downregulated microRNA (3613-5p) to the model. More work is underway to understand how a test for these microRNAs would perform in larger populations, Dr. Taylor said.

MicroRNAs also are likely to play functional roles in chronic endometriosis and may mediate treatment response, he noted. For example, the microRNA 125b-5p, which is upregulated in endometriosis, increases the expression of inflammatory cytokines and tumor necrosis factor alpha in macrophages, and the aromatase inhibitor letrozole, which reduces pelvic pain in the disease, increases the expression of let-7 microRNAs, with corresponding decreases in the migration of endometrial cells (Fertil Steril. 2016 Sep 1;106[3]:673-80). “Maybe these microRNAs are changing metabolism. Maybe they are changing immune cell activity,” Dr. Taylor said. “I think they are doing a lot more than sitting around waiting for us to discover them.”

None of the 24 patients with endometriosis in his study had taken oral contraceptives in the 3 months prior to serum sampling, Dr. Taylor noted. “We need to look at oral contraception as a potential confounder,” he acknowledged. “If something is independent of the menstrual cycle phase, that is much better than a marker that is dependent on cycle phase.”

Menstrual cycle phase and oral contraceptives are just two of many potential confounders of biomarkers in chronic endometriosis, according to Linda Giudice, MD, PhD, of the University of California, San Francisco. Disease severity, as well as the type, number, and location of lesions and the presence or absence of coexisting inflammatory disorders all can potentially affect the sensitivity and specificity of a marker, she said. Consequently, “there is no single biomarker for chronic endometriosis,” but there are several candidates besides microRNAs, she added. For example, studies show that menstrual blood is readily distinguishable from peripheral blood, and closely resembles the immune environment of the uterus. Another study found that urinary peptides distinguished patients with moderate to severe endometriosis from healthy controls, and mild disease from severe disease, with sensitivities and specificities ranging from 72% to 88% (Fertil Steril. 2011 Mar 15;95[4]:1261-6).

Other potential sources of diagnostic tests include the endometrial proteome, transcriptome, and methylome, as well as endometrial stem cells, Dr. Giudice said. But for now, surgical diagnosis remains the gold standard, and the World Endometriosis Research Foundation is working to homogenize recording of surgical phenotypic information and laparoscopic specimens to improve data quality, she added.

Dr. Taylor did not report funding sources. He disclosed financial ties to Pfizer, OvaScience AbbVie, Bayer, and Euroscreen. Dr. Giudice acknowledged support from the National Institutes of Health and the UCSF NIH Human Endometrial Tissue and DNA Bank. She disclosed ties to Merck, Pfizer, NextGen Jane, AbbVie, and Juniper Pharmaceuticals.

SALT LAKE CITY – Certain nonsurgical biomarkers appear to accurately identify chronic endometriosis, and might soon spare patients from years of misdiagnosis and the costs and burden of diagnostic surgery, according to experts at the annual meeting of the American Society for Reproductive Medicine.

Most notably, expression levels of three microRNAs, 125-b-5p, 451a, and 3613-5p, correctly distinguished patients with chronic endometriosis from healthy controls, said Hugh S. Taylor, MD, of Yale University in New Haven, Conn.

Patients may go up to 12 years and see five or more physicians before they are diagnosed. Clinicians tend to rely on surgical diagnosis, but “there is a reluctance to perform surgery unless there is severe disease,” he added. “The lack of nonsurgical biomarkers contributes significantly to delays in diagnosis and timely intervention.”

These concerns prompted Dr. Taylor and his associates to study microRNAs – the short, noncoding, functional RNAs that promote messenger RNA breakdown or repress its translation. MicroRNA expression varies by tissue type and disease status, and occurs in a variety of body fluids, giving them real potential as nonsurgical biomarkers, Dr. Taylor said. To examine their role in endometriosis, he and his associates performed microarray profiling and confirmatory quantitative real-time polymerase chain reaction testing of serum samples from 24 women with chronic endometriosis and 24 healthy women who served as controls (Fertil Steril. 2016 Aug;106[2]:402-9).

MicroRNA 125b-5p was upregulated the most in endometriosis patients and distinguished patients from controls with a “giant” area under the receiver operating characteristic curve value of 0.974, Dr. Taylor said. Remarkably, this value rose to 1 – meaning that sensitivity and specificity both were 100% – when the researchers added another upregulated microRNA (451a) and a downregulated microRNA (3613-5p) to the model. More work is underway to understand how a test for these microRNAs would perform in larger populations, Dr. Taylor said.

MicroRNAs also are likely to play functional roles in chronic endometriosis and may mediate treatment response, he noted. For example, the microRNA 125b-5p, which is upregulated in endometriosis, increases the expression of inflammatory cytokines and tumor necrosis factor alpha in macrophages, and the aromatase inhibitor letrozole, which reduces pelvic pain in the disease, increases the expression of let-7 microRNAs, with corresponding decreases in the migration of endometrial cells (Fertil Steril. 2016 Sep 1;106[3]:673-80). “Maybe these microRNAs are changing metabolism. Maybe they are changing immune cell activity,” Dr. Taylor said. “I think they are doing a lot more than sitting around waiting for us to discover them.”

None of the 24 patients with endometriosis in his study had taken oral contraceptives in the 3 months prior to serum sampling, Dr. Taylor noted. “We need to look at oral contraception as a potential confounder,” he acknowledged. “If something is independent of the menstrual cycle phase, that is much better than a marker that is dependent on cycle phase.”

Menstrual cycle phase and oral contraceptives are just two of many potential confounders of biomarkers in chronic endometriosis, according to Linda Giudice, MD, PhD, of the University of California, San Francisco. Disease severity, as well as the type, number, and location of lesions and the presence or absence of coexisting inflammatory disorders all can potentially affect the sensitivity and specificity of a marker, she said. Consequently, “there is no single biomarker for chronic endometriosis,” but there are several candidates besides microRNAs, she added. For example, studies show that menstrual blood is readily distinguishable from peripheral blood, and closely resembles the immune environment of the uterus. Another study found that urinary peptides distinguished patients with moderate to severe endometriosis from healthy controls, and mild disease from severe disease, with sensitivities and specificities ranging from 72% to 88% (Fertil Steril. 2011 Mar 15;95[4]:1261-6).

Other potential sources of diagnostic tests include the endometrial proteome, transcriptome, and methylome, as well as endometrial stem cells, Dr. Giudice said. But for now, surgical diagnosis remains the gold standard, and the World Endometriosis Research Foundation is working to homogenize recording of surgical phenotypic information and laparoscopic specimens to improve data quality, she added.

Dr. Taylor did not report funding sources. He disclosed financial ties to Pfizer, OvaScience AbbVie, Bayer, and Euroscreen. Dr. Giudice acknowledged support from the National Institutes of Health and the UCSF NIH Human Endometrial Tissue and DNA Bank. She disclosed ties to Merck, Pfizer, NextGen Jane, AbbVie, and Juniper Pharmaceuticals.

Abstract

• Objective: To summarize the current literature, research findings, and interventions for self-care communication in the physician-patient relationship.
• Methods: Literature review.
• Results: Diabetes management requires patients to follow complex self-care recommendations for nutrition, physical activity, blood glucose monitoring, and medication. Adherence to these recommendations improves glycemic control and mitigates the risk of diabetes complications; however, many patients struggle to follow these behaviors in everyday life. In the physician-patient relationship, self-care communication is largely influenced by interpersonal trust. Physicians need to incorporate interpersonal and relational skills to establish a trusting relationship. Physician-level barriers to self-care communication include lack of time, lack of collaboration and teamwork among health care providers, lack of patients’ access to resources, and lack of psychosocial support for diabetes patients. Among patients, psychosocial barriers and health literacy may affect willingness to discuss self-care. Motivational interviewing techniques may be helpful for improving communication around patient self-management and promotion of healthy behaviors.
• Conclusion: Physicians can assist patients with their diabetes self-care by discussing self-care challenges during medical visits.

Diabetes is one of the most significant and growing chronic health problems in the world, affecting approximately 415 million people [1]. Diabetes is marked by the body’s inability to make insulin as well as the body’s inability to effectively use the insulin it produces [2]. Diagnosis of diabetes has increased sharply in recent decades and is expected to increase even more, with the largest increases in middle- and low-income countries [3]. Diabetes is a leading cause of blindness, kidney failure, myocardial infarction, stroke, and amputation [3], and in 2015 it accounted for 5 million deaths worldwide [1]. Further, diabetes’s costs to society represent 12% ($673 billion) of global health expenditures [1]. By 2040, models predict that 642 million people will be diagnosed with diabetes and costs will continue to grow as the population ages [1]. Thus, prevention of diabetes is the ultimate goal; however, more effective management for individuals already diagnosed with diabetes is critical to reduce the risk of complications and the economic burden of the disease.

Diabetes management requires patients to perform complex self-care regimens, including weight reduction, frequent blood glucose monitoring, taking oral and/or insulin medications, engaging in physical activity, adhering to diabetes nutrition guidelines, and attending clinic appointments [4–9]. These self-care behaviors are critically linked to improved glycemic control, however, integrating them into one’s daily life can be challenging [10–12]. Recent National Health and Nutrition Examination Survey (NHANES) data show that approximately half of adults with diabetes are not meeting recommended goals for diabetes care [13]. Physicians can assist patients with their diabetes self-care by scheduling frequent follow-up visits and discussing self-care challenges with their patients [14].

In this review, we discuss the current literature on physician-patient communication and diabetes self-care. First, we discuss the qualities of an effective physician-patient relationship followed by the importance of self-care communication in diabetes care. Next, we discuss barriers and facilitators to self-care communication. Finally, we review interventions for improving physician-patient communication in diabetes self-care.

Qualities of an Effective Physician-Patient Relationship

Successful diabetes care requires teamwork between physicians and patients [15]. Two components of successful teamwork are physician-patient communication and shared decision-making, both of which have been shown to improve patient satisfaction, adherence to treatment plans and health outcomes [16–23]. In shared decision-making, the physician and patient share medical information [24–26]. Specifically, the physician presents different treatment options to the patient and describes the risks and benefits of each option. Then the patient expresses his or her preferences for treatment to ensure that the care provided aligns with the patient’s values and needs [27]. Thus, shared decision-making in the treatment relationship is predicated on effective communication between the physician and patient [19].

Effective physician-patient communication is supported by continuous care [19,28], a secure attachment style [29, 30], shared goals [19], a mutual understanding of respective roles and tasks [15,31–33], and a bond characterized by liking, confidence, and trust [19,28,31]. Trust is paramount in physician-patient communication. Interpersonal trust and social trust are the 2 predominant types [34]. Interpersonal trust refers to the relationship the patient has with the physician, specifically the confidence the patient has in the physician as well as the responsibility, competence, compassion, and regard the physician has for the patient’s welfare [34–36]. For patients and physicians, interpersonal trust is developed over time with repeated interactions [34–36]. On the other hand, social trust refers to the beliefs of honesty, integrity, and reliability in others [36]. Social trust is influenced by social constructs, including the media and institutions of higher education [36].

In the physician-patient relationship, self-care communication is largely influenced by interpersonal trust. A patient’s trust can be acquired through multiple medical appointments with the physician. Further, how the patient is treated during these appointments as well as how much time and attention the physician invests in the patient’s care influences the level of interpersonal trust. A high level of trust in the relationship can lead to in improvements in adherence to self-care, continuity of care, physician-patient communication, and overall quality of the physician-patient relationship [37–39].

In the diabetes physician-patient relationship, minimal research has explored how trust in one’s physician impacts self-care communication. In a study by Beverly and colleagues, diabetes patients emphasized the importance of a trusting physician-patient relationship for diabetes care [27]. Another study by Ritholz and colleagues found that physicians and patients both stress the importance of developing trust to facilitate self-care communication [40]. Specifically, trust as well as acceptance from the physician contributes to open and honest self-care communication in the physician-patient diabetes relationship[40]. Additional research is needed to determine whether a high level of physician-patient trust is associated with increased self-care behaviors and improved diabetes outcomes over time.

Importance of Diabetes Self-Care Communication

Diabetes self-care communication in the physician-patient relationship increases patient satisfaction, improves adherence to treatment regimens, and leads to better clinical outcomes [22,41–43]. For physicians, effective self-care communication requires the performance of specific communication tasks and behaviors, including collecting a medical history, explaining a diagnosis and prognosis, and providing clear and concise therapeutic instructions [44]. In addition, physicians must incorporate interpersonal and relational skills to establish a trusting relationship [44,45]. Both physicians and patients agree that a trusting treatment relationship is a requirement for open and honest self-care communication [45]. For patients, effective communication necessitates the disclosure of self-care successes and failures [46]. Diabetes patients face challenging self-care regimens, and these challenges can interfere with glycemic control and increase the risk for diabetes complications [47,48]. For this reason, patients must feel comfortable discussing their self-are challenges so that their physician can individualize treatment prescriptions and recommendations, thereby increasing the likelihood of treatment success.

Barriers to Self-Care Communication

Physician-patient self-care communication is essential to improving patient adherence [29,49] yet numerous barriers exist that undermine effective physician-patient self-care communication. From the physician perspective, the most commonly cited barrier to self-care communication is time [50]. A recent study of family medicine practices found that the time physicians spent discussing self-care with their patients varied from 1 to 17 minutes, suggesting that time is a major barrier to self-care communication [51]. Other barriers include lack of collaboration and teamwork among health care providers, lack of patients’ access to resources, and lack of psychosocial support for patients with diabetes [50]. Relatedly, Beverly and colleagues [52] found that physicians often feel inadequately trained to address diabetes patients’ psychosocial issues and this perceived lack of expertise may contribute to physicians feeling overwhelmed and frustrated within the physician-patient relationship, which may hinder open self-care communication.

For patients, barriers tend to differ from those perceived by physicians. A qualitative study using semi-structured interviews with patients and clinicians, and direct observation of clinical encounters at an inner-city family practice training site, revealed different perceptions of the term “control” between physicians and patients. In practice, physicians used the term “control” to focus on the management of blood glucose levels rather than trying to understand the patients’ understanding of diabetes and subsequent treatment goals. Differing viewpoints contributed to frustration and hindered effective communication [53]. In another qualitative study with physicians and patients, both noted that patients were reluctant to discuss self-care for fear being judged or shamed about food intake and weight [45]. This finding was supported in a quantitative follow-up study assessing patient reluctance to discuss self-care. Thirty percent of surveyed patients reported reluctance to discussing self-care with their physicians for fear of being judged, not wanting to disappoint their doctors, guilt, and shame [14]. Interestingly, patients reporting elevated depressive symptoms were more likely to be reluctant to discuss their self-care [14]. Cognitive behavioral changes (eg, cognitive distortions, avoidance behavior, attention deficits) associated with major depression and depressive symptoms may impair patients’ ability to recall self-care information. Also, patients reporting more depressive symptoms may be more socially withdrawn during a medical appointment, and thus less willing to communicate with their physician about self-care.

Other studies found that psychosocial factors such as diabetes distress [54,55] and pessimistic attitudes [56–59], cultural differences [60–66], lack of family and social support [60,67–70], lack of readiness to change behavior [71], introversion and social isolation [72,73], hypo-glycemia fear [74,75] and ineffectual coping styles [76,77] interfere with self-care and glycemic control. Further, low health literacy is associated with difficulty adhering to self-care, particular medication regimens, and negative health outcomes [78].

In summary psychosocial barriers and health literacy may affect a patients’ willingness to discuss self-care during a medical visit. Therefore, routine assessment of psychosocial factors and health literacy may be necessary to address a patient’s barriers to self-care as well as to promote open and honest self-care communication. Interventions and evidenced-based approaches that address psychosocial factors, health literacy, and physician-patient self-care communication are needed.

Facilitators to Self-Care Communication

Despite numerous barriers to self-care communication, several factors promote self-care communication in the physician-patient relationship. For example, direct and non-accusatory communication from physicians as well as providing patients with hope for living with diabetes both support physician-patient self-care communication [45]. A recent systematic review by Sohal and colleagues [79] found that trust in physicians, the use of culturally appropriate exercise and dietary advice, and increasing family involvement improved physician-patient communication and diabetes self-care [79]. Lastly, a study by Schillinger and colleagues [80] found that physician assessment of patient recall and comprehension of new concepts during medical visits improved diabetes outcomes [80].

Patient-Physician Self-Care Communication Interventions

One of the more successful interventions for improving diabetes self-care and patient-physician communication is motivational interviewing (MI). MI is a non-judgmental communication style designed to explore a patient’s intrinsic motivation to change health behaviors [81]. Inherent to MI is the belief that motivation for change is malleable and that it can be transformed in the context of the patient-physician relationship [81]. MI is a patient-centered method designed to empower a patient’s ability and responsibility to make health-related decisions, with the physician supporting the patient’s autonomy in the process [82]. Recent meta-analyses and systematic reviews [83–87] showed that MI interventions improve self-care behaviors and glycemic control in the short-term; long-term effects of MI on self-care and glycemia remain inconclusive. More high-quality research is needed to evaluate the MI training content of these interventions in order to determine its long-term effectiveness and replicate outcomes in various healthcare settings [87].

Other studies not included in the meta-analyses and reviews found MI interventions improved self-care behaviors [88–90], glycemic control [90,91], and quality of life [91]. A qualitative study exploring diabetes patients’ experiences with MI and self-care behaviors revealed that patients’ appreciate when providers initiate discussions that result in new ways of thinking about self-care and promote a sense of well-being in patients [92]. New research utilizing patient navigators to connect diabetes patients’ to their primary care providers showed MI techniques improved patient self-efficacy and glycemic control [93]. Another study, an internet-based incentives study, found that the application of a brief MI interviewing session improved blood glucose monitoring in adolescents with type 1 diabetes [94]. Thus, creative strategies that employ MI techniques in collaboration with other members of the health care team (ie, patient navigation [93], telehealth [89], health coaching [95], internet-based tools [94]) hold promise for improving self-care and patient-physician communication. Increased collaboration with members of the health care team (eg, certified diabetes educators, nurses, dietitians, pharmacists, exercise physiologists), community health workers [96,97] and peer mentors [98,99] may help reinforce messages, promote shared decision-making, improve diabetes outcomes, increase patient satisfaction, and reduce medical costs [100].

Few other interventions have directly addressed physician-patient diabetes self-care communication. One older study examined the effectiveness of an intervention designed to increase of diabetes patients’ involvement in medical decision-making [16]. Patients randomized to the intervention arm participated in a 20-minute session prior to meeting with their physician, in which researchers reviewed their medical chart and used systematic prompts to encourage patients to negotiate medical decisions with their physician. Patients in the control arm received standard educational materials in a session of equal length. Patients in the intervention arm improved glycemia and elicited twice the amount of medical information from their physician compared to controls [16]. These findings suggest that brief interventions prior to medical appointments can improve patient communication, self-care behavior, and in turn, diabetes outcomes [16].

A recent study evaluated the effectiveness of a training program in communication skills for pediatric diabetes care providers in the UK [101, 102]. In this cluster randomized controlled trial, pediatric providers allocated to the Talking Diabetes intervention participated in web-based material and face-to-face seminars designed to prepare providers for constructive self-care conversations with patients as well as skills for promoting behavior change. The psychoeducational training emphasized shared decision-making and utilized motivational interviewing techniques [101]. Twenty-six centers and 693 young people with type 1 diabetes participated in the study [102]. At 12-month follow-up, the Talking Diabetes intervention did not demonstrate improvements in glycemic control. Further, the intervention had a negative effect on patients’ quality of life but a short-term improvement in coping [102]. Interestingly, parents of patients in the intervention arm reported greater continuity of care, which suggests that parents benefited more from the intervention than their children. Future communication interventions targeting the pediatric population should provide ongoing support to children of physicians exposed to interventions such as Talking Diabetes [102].

Currently, 3 ongoing studies aim to improve self-care and clinical outcomes via physician-patient communication interventions. A study by Ricci-Cabello and colleagues [103] aims to improve diabetes self-care by enhancing patient-physician communication in an underserved community of adults with uncontrolled type 2 diabetes. In this 3-arm randomized controlled trial, patients allocated to groups A and B received communication skills training and graphic feedback about glycosylated hemoglobin A_1c levels; patients in group C received usual care. Patients in group B also received telephone reinforcement [103]. The second study, by Billimek and colleagues, aims to improve physician-patient communication about medication regimens via diabetes coaching [104]. In this intervention, 190 Mexican-American adult patients with type 2 diabetes were randomly assigned to complete a Coached Care visit with trained community health workers or a Coached Care visit plus the EMPATHy software toolkit, a computer-based activity with strategies and resources to overcome self-care barriers. The primary endpoints are (1) the development of care plan that addresses everyday barriers to medication adherence and (2) completion of a concrete behavioral goal [104]. Finally, the third study, by Grant and colleagues, aims to improve physician-patient communication via a pre-visit prioritization of diabetes concerns. In this controlled, cluster-randomized, multisite trial, primary care physicians were randomized to the Pre-Visit Prioritization for Complex Patients with Diabetes or the control group [105]. The Pre-Visit Prioritization IT-tool is designed to help patients identify one or two concerns prior to a medical visit and then send these priorities to the primary care physician via an electronic health record. The overall goal of the intervention is to improve communication of self-care concerns during a medical visit [105]. Findings from these 3 interventions are forthcoming; findings may provide evidence for validated interventions that improve physician-patient self-care communication in diabetes.

Techniques to Improve Self-Care Communication

Incorporating communication skills in continuing medical education and diabetes education may improve self-care communication in the physician-patient relationship. Educational programs that teach physicians how to provide consistent messages, repeat information, reinforce and offer feedback regarding specific self-care behaviors, and problem-solve self-care challenges may improve patients’ willingness to discuss self-care [14,106]. Most patients will remember only a small portion of the information given to them during medical visit. Studies that compare how much information patients retain versus how much information physicians provide show that patients forget 31% to 71% of information [107]. Therefore, physicians need techniques that promote open self-care communication during a visit. The following techniques can help physicians improve self-care communication [108]:

1. Discuss the most important self-care information first; patients tend to remember the information that is presented first.
2. Use the phrase “This is very important…” when discussing key points because patients will remember things that are perceived as important.
3. Deliver simple, clear, and concrete instructions; patients are more likely to forget complex or confusing instructions. For example, “Check your blood glucose every morning within five minutes of waking up and before you eat breakfast” is more specific and easier to follow than “Check your blood glucose”.
4. Ask open-ended questions to allow patients to verbalize feelings or concerns about their diabetes self-care.
5.  Employ MI techniques to help patients who are struggling to initiate and adhere to self-care behaviors. MI tools, such as the Readiness Ruler, Self-Evaluation Rulers, Decisional Balance Matrix, and Health Behavior Menu (Figure), may help patients and physicians discuss self-care behaviors during a medical visit [109].
   

– Express empathy by reflective listening and asking patients for permission before offering information or advice about diabetes self-care.

– Roll with resistance by engaging the patient in the process of problem solving rather than opposing a patient’s resistance to change behaviors.

– Develop discrepancy by helping the patient recognize that there is an inconsistency between his/her behavior and personal goals.

– Support self-efficacy by empowering the patient to believe that he/she can change behaviors.

   6. Demonstrate active listening skills by reflecting and summarizing the patient’s statements. Reflecting and summarizing show the patient that the physician has been listening to concerns and understands what the patient is saying. This is also an opportunity to correct any   miscommunications from the visit.

  7. Write down instructions or provide handouts to the patient to help reinforce learning and information retention.

  8. Ask patients to write a list of questions a few days prior to the medical appointment and bring it with them. Patients are more likely to remember information about issues they have previously considered that directly relate to them.

  9. Consider collaborating with community health workers, patient navigators, peer mentors, and other members of the healthcare team to improve communication, diabetes outcomes, and patient satisfaction.

Summary

Physician-patient self-care communication is essential to achieving optimal diabetes outcomes [15,22,33,110] Patients’ ability to inform physicians about their self-care challenges [14], and physicians’ ability to respond to patients’ self-care reports directly and in non-accusatory language, are vital factors in effective diabetes care [45]. Interventions and education that promote open and honest conversations are particularly important given patients’ well-documented struggles achieving self-care and glycemic goals [111] and physicians’ feelings of inadequacy, frustration, and fatigue when they are not making an impact on patients’ outcomes [48,112]. More research is needed to determine the best strategies to improve self-care communication in the physician-patient relationship.

Corresponding author: Elizabeth A. Beverly, PhD, Department of Family Medicine, Ohio University Heritage College of Osteopathic Medicine, Athens, OH 45701, [email protected].

Financial disclosures: None.

Author contributions: drafting of article, EAB, MFW, ABC, KEP, NNI; critical revision of the article, EAB, MFW, ABC, KEP, NNI.

Abstract

• Objective: To summarize the current literature, research findings, and interventions for self-care communication in the physician-patient relationship.
• Methods: Literature review.
• Results: Diabetes management requires patients to follow complex self-care recommendations for nutrition, physical activity, blood glucose monitoring, and medication. Adherence to these recommendations improves glycemic control and mitigates the risk of diabetes complications; however, many patients struggle to follow these behaviors in everyday life. In the physician-patient relationship, self-care communication is largely influenced by interpersonal trust. Physicians need to incorporate interpersonal and relational skills to establish a trusting relationship. Physician-level barriers to self-care communication include lack of time, lack of collaboration and teamwork among health care providers, lack of patients’ access to resources, and lack of psychosocial support for diabetes patients. Among patients, psychosocial barriers and health literacy may affect willingness to discuss self-care. Motivational interviewing techniques may be helpful for improving communication around patient self-management and promotion of healthy behaviors.
• Conclusion: Physicians can assist patients with their diabetes self-care by discussing self-care challenges during medical visits.

Diabetes is one of the most significant and growing chronic health problems in the world, affecting approximately 415 million people [1]. Diabetes is marked by the body’s inability to make insulin as well as the body’s inability to effectively use the insulin it produces [2]. Diagnosis of diabetes has increased sharply in recent decades and is expected to increase even more, with the largest increases in middle- and low-income countries [3]. Diabetes is a leading cause of blindness, kidney failure, myocardial infarction, stroke, and amputation [3], and in 2015 it accounted for 5 million deaths worldwide [1]. Further, diabetes’s costs to society represent 12% ($673 billion) of global health expenditures [1]. By 2040, models predict that 642 million people will be diagnosed with diabetes and costs will continue to grow as the population ages [1]. Thus, prevention of diabetes is the ultimate goal; however, more effective management for individuals already diagnosed with diabetes is critical to reduce the risk of complications and the economic burden of the disease.

Diabetes management requires patients to perform complex self-care regimens, including weight reduction, frequent blood glucose monitoring, taking oral and/or insulin medications, engaging in physical activity, adhering to diabetes nutrition guidelines, and attending clinic appointments [4–9]. These self-care behaviors are critically linked to improved glycemic control, however, integrating them into one’s daily life can be challenging [10–12]. Recent National Health and Nutrition Examination Survey (NHANES) data show that approximately half of adults with diabetes are not meeting recommended goals for diabetes care [13]. Physicians can assist patients with their diabetes self-care by scheduling frequent follow-up visits and discussing self-care challenges with their patients [14].

In this review, we discuss the current literature on physician-patient communication and diabetes self-care. First, we discuss the qualities of an effective physician-patient relationship followed by the importance of self-care communication in diabetes care. Next, we discuss barriers and facilitators to self-care communication. Finally, we review interventions for improving physician-patient communication in diabetes self-care.

Qualities of an Effective Physician-Patient Relationship

Successful diabetes care requires teamwork between physicians and patients [15]. Two components of successful teamwork are physician-patient communication and shared decision-making, both of which have been shown to improve patient satisfaction, adherence to treatment plans and health outcomes [16–23]. In shared decision-making, the physician and patient share medical information [24–26]. Specifically, the physician presents different treatment options to the patient and describes the risks and benefits of each option. Then the patient expresses his or her preferences for treatment to ensure that the care provided aligns with the patient’s values and needs [27]. Thus, shared decision-making in the treatment relationship is predicated on effective communication between the physician and patient [19].

Effective physician-patient communication is supported by continuous care [19,28], a secure attachment style [29, 30], shared goals [19], a mutual understanding of respective roles and tasks [15,31–33], and a bond characterized by liking, confidence, and trust [19,28,31]. Trust is paramount in physician-patient communication. Interpersonal trust and social trust are the 2 predominant types [34]. Interpersonal trust refers to the relationship the patient has with the physician, specifically the confidence the patient has in the physician as well as the responsibility, competence, compassion, and regard the physician has for the patient’s welfare [34–36]. For patients and physicians, interpersonal trust is developed over time with repeated interactions [34–36]. On the other hand, social trust refers to the beliefs of honesty, integrity, and reliability in others [36]. Social trust is influenced by social constructs, including the media and institutions of higher education [36].

In the physician-patient relationship, self-care communication is largely influenced by interpersonal trust. A patient’s trust can be acquired through multiple medical appointments with the physician. Further, how the patient is treated during these appointments as well as how much time and attention the physician invests in the patient’s care influences the level of interpersonal trust. A high level of trust in the relationship can lead to in improvements in adherence to self-care, continuity of care, physician-patient communication, and overall quality of the physician-patient relationship [37–39].

In the diabetes physician-patient relationship, minimal research has explored how trust in one’s physician impacts self-care communication. In a study by Beverly and colleagues, diabetes patients emphasized the importance of a trusting physician-patient relationship for diabetes care [27]. Another study by Ritholz and colleagues found that physicians and patients both stress the importance of developing trust to facilitate self-care communication [40]. Specifically, trust as well as acceptance from the physician contributes to open and honest self-care communication in the physician-patient diabetes relationship[40]. Additional research is needed to determine whether a high level of physician-patient trust is associated with increased self-care behaviors and improved diabetes outcomes over time.

Importance of Diabetes Self-Care Communication

Diabetes self-care communication in the physician-patient relationship increases patient satisfaction, improves adherence to treatment regimens, and leads to better clinical outcomes [22,41–43]. For physicians, effective self-care communication requires the performance of specific communication tasks and behaviors, including collecting a medical history, explaining a diagnosis and prognosis, and providing clear and concise therapeutic instructions [44]. In addition, physicians must incorporate interpersonal and relational skills to establish a trusting relationship [44,45]. Both physicians and patients agree that a trusting treatment relationship is a requirement for open and honest self-care communication [45]. For patients, effective communication necessitates the disclosure of self-care successes and failures [46]. Diabetes patients face challenging self-care regimens, and these challenges can interfere with glycemic control and increase the risk for diabetes complications [47,48]. For this reason, patients must feel comfortable discussing their self-are challenges so that their physician can individualize treatment prescriptions and recommendations, thereby increasing the likelihood of treatment success.

Barriers to Self-Care Communication

Physician-patient self-care communication is essential to improving patient adherence [29,49] yet numerous barriers exist that undermine effective physician-patient self-care communication. From the physician perspective, the most commonly cited barrier to self-care communication is time [50]. A recent study of family medicine practices found that the time physicians spent discussing self-care with their patients varied from 1 to 17 minutes, suggesting that time is a major barrier to self-care communication [51]. Other barriers include lack of collaboration and teamwork among health care providers, lack of patients’ access to resources, and lack of psychosocial support for patients with diabetes [50]. Relatedly, Beverly and colleagues [52] found that physicians often feel inadequately trained to address diabetes patients’ psychosocial issues and this perceived lack of expertise may contribute to physicians feeling overwhelmed and frustrated within the physician-patient relationship, which may hinder open self-care communication.

For patients, barriers tend to differ from those perceived by physicians. A qualitative study using semi-structured interviews with patients and clinicians, and direct observation of clinical encounters at an inner-city family practice training site, revealed different perceptions of the term “control” between physicians and patients. In practice, physicians used the term “control” to focus on the management of blood glucose levels rather than trying to understand the patients’ understanding of diabetes and subsequent treatment goals. Differing viewpoints contributed to frustration and hindered effective communication [53]. In another qualitative study with physicians and patients, both noted that patients were reluctant to discuss self-care for fear being judged or shamed about food intake and weight [45]. This finding was supported in a quantitative follow-up study assessing patient reluctance to discuss self-care. Thirty percent of surveyed patients reported reluctance to discussing self-care with their physicians for fear of being judged, not wanting to disappoint their doctors, guilt, and shame [14]. Interestingly, patients reporting elevated depressive symptoms were more likely to be reluctant to discuss their self-care [14]. Cognitive behavioral changes (eg, cognitive distortions, avoidance behavior, attention deficits) associated with major depression and depressive symptoms may impair patients’ ability to recall self-care information. Also, patients reporting more depressive symptoms may be more socially withdrawn during a medical appointment, and thus less willing to communicate with their physician about self-care.

Other studies found that psychosocial factors such as diabetes distress [54,55] and pessimistic attitudes [56–59], cultural differences [60–66], lack of family and social support [60,67–70], lack of readiness to change behavior [71], introversion and social isolation [72,73], hypo-glycemia fear [74,75] and ineffectual coping styles [76,77] interfere with self-care and glycemic control. Further, low health literacy is associated with difficulty adhering to self-care, particular medication regimens, and negative health outcomes [78].

In summary psychosocial barriers and health literacy may affect a patients’ willingness to discuss self-care during a medical visit. Therefore, routine assessment of psychosocial factors and health literacy may be necessary to address a patient’s barriers to self-care as well as to promote open and honest self-care communication. Interventions and evidenced-based approaches that address psychosocial factors, health literacy, and physician-patient self-care communication are needed.

Facilitators to Self-Care Communication

Despite numerous barriers to self-care communication, several factors promote self-care communication in the physician-patient relationship. For example, direct and non-accusatory communication from physicians as well as providing patients with hope for living with diabetes both support physician-patient self-care communication [45]. A recent systematic review by Sohal and colleagues [79] found that trust in physicians, the use of culturally appropriate exercise and dietary advice, and increasing family involvement improved physician-patient communication and diabetes self-care [79]. Lastly, a study by Schillinger and colleagues [80] found that physician assessment of patient recall and comprehension of new concepts during medical visits improved diabetes outcomes [80].

Patient-Physician Self-Care Communication Interventions

One of the more successful interventions for improving diabetes self-care and patient-physician communication is motivational interviewing (MI). MI is a non-judgmental communication style designed to explore a patient’s intrinsic motivation to change health behaviors [81]. Inherent to MI is the belief that motivation for change is malleable and that it can be transformed in the context of the patient-physician relationship [81]. MI is a patient-centered method designed to empower a patient’s ability and responsibility to make health-related decisions, with the physician supporting the patient’s autonomy in the process [82]. Recent meta-analyses and systematic reviews [83–87] showed that MI interventions improve self-care behaviors and glycemic control in the short-term; long-term effects of MI on self-care and glycemia remain inconclusive. More high-quality research is needed to evaluate the MI training content of these interventions in order to determine its long-term effectiveness and replicate outcomes in various healthcare settings [87].

Other studies not included in the meta-analyses and reviews found MI interventions improved self-care behaviors [88–90], glycemic control [90,91], and quality of life [91]. A qualitative study exploring diabetes patients’ experiences with MI and self-care behaviors revealed that patients’ appreciate when providers initiate discussions that result in new ways of thinking about self-care and promote a sense of well-being in patients [92]. New research utilizing patient navigators to connect diabetes patients’ to their primary care providers showed MI techniques improved patient self-efficacy and glycemic control [93]. Another study, an internet-based incentives study, found that the application of a brief MI interviewing session improved blood glucose monitoring in adolescents with type 1 diabetes [94]. Thus, creative strategies that employ MI techniques in collaboration with other members of the health care team (ie, patient navigation [93], telehealth [89], health coaching [95], internet-based tools [94]) hold promise for improving self-care and patient-physician communication. Increased collaboration with members of the health care team (eg, certified diabetes educators, nurses, dietitians, pharmacists, exercise physiologists), community health workers [96,97] and peer mentors [98,99] may help reinforce messages, promote shared decision-making, improve diabetes outcomes, increase patient satisfaction, and reduce medical costs [100].

Few other interventions have directly addressed physician-patient diabetes self-care communication. One older study examined the effectiveness of an intervention designed to increase of diabetes patients’ involvement in medical decision-making [16]. Patients randomized to the intervention arm participated in a 20-minute session prior to meeting with their physician, in which researchers reviewed their medical chart and used systematic prompts to encourage patients to negotiate medical decisions with their physician. Patients in the control arm received standard educational materials in a session of equal length. Patients in the intervention arm improved glycemia and elicited twice the amount of medical information from their physician compared to controls [16]. These findings suggest that brief interventions prior to medical appointments can improve patient communication, self-care behavior, and in turn, diabetes outcomes [16].

A recent study evaluated the effectiveness of a training program in communication skills for pediatric diabetes care providers in the UK [101, 102]. In this cluster randomized controlled trial, pediatric providers allocated to the Talking Diabetes intervention participated in web-based material and face-to-face seminars designed to prepare providers for constructive self-care conversations with patients as well as skills for promoting behavior change. The psychoeducational training emphasized shared decision-making and utilized motivational interviewing techniques [101]. Twenty-six centers and 693 young people with type 1 diabetes participated in the study [102]. At 12-month follow-up, the Talking Diabetes intervention did not demonstrate improvements in glycemic control. Further, the intervention had a negative effect on patients’ quality of life but a short-term improvement in coping [102]. Interestingly, parents of patients in the intervention arm reported greater continuity of care, which suggests that parents benefited more from the intervention than their children. Future communication interventions targeting the pediatric population should provide ongoing support to children of physicians exposed to interventions such as Talking Diabetes [102].

Currently, 3 ongoing studies aim to improve self-care and clinical outcomes via physician-patient communication interventions. A study by Ricci-Cabello and colleagues [103] aims to improve diabetes self-care by enhancing patient-physician communication in an underserved community of adults with uncontrolled type 2 diabetes. In this 3-arm randomized controlled trial, patients allocated to groups A and B received communication skills training and graphic feedback about glycosylated hemoglobin A_1c levels; patients in group C received usual care. Patients in group B also received telephone reinforcement [103]. The second study, by Billimek and colleagues, aims to improve physician-patient communication about medication regimens via diabetes coaching [104]. In this intervention, 190 Mexican-American adult patients with type 2 diabetes were randomly assigned to complete a Coached Care visit with trained community health workers or a Coached Care visit plus the EMPATHy software toolkit, a computer-based activity with strategies and resources to overcome self-care barriers. The primary endpoints are (1) the development of care plan that addresses everyday barriers to medication adherence and (2) completion of a concrete behavioral goal [104]. Finally, the third study, by Grant and colleagues, aims to improve physician-patient communication via a pre-visit prioritization of diabetes concerns. In this controlled, cluster-randomized, multisite trial, primary care physicians were randomized to the Pre-Visit Prioritization for Complex Patients with Diabetes or the control group [105]. The Pre-Visit Prioritization IT-tool is designed to help patients identify one or two concerns prior to a medical visit and then send these priorities to the primary care physician via an electronic health record. The overall goal of the intervention is to improve communication of self-care concerns during a medical visit [105]. Findings from these 3 interventions are forthcoming; findings may provide evidence for validated interventions that improve physician-patient self-care communication in diabetes.

Techniques to Improve Self-Care Communication

Incorporating communication skills in continuing medical education and diabetes education may improve self-care communication in the physician-patient relationship. Educational programs that teach physicians how to provide consistent messages, repeat information, reinforce and offer feedback regarding specific self-care behaviors, and problem-solve self-care challenges may improve patients’ willingness to discuss self-care [14,106]. Most patients will remember only a small portion of the information given to them during medical visit. Studies that compare how much information patients retain versus how much information physicians provide show that patients forget 31% to 71% of information [107]. Therefore, physicians need techniques that promote open self-care communication during a visit. The following techniques can help physicians improve self-care communication [108]:

1. Discuss the most important self-care information first; patients tend to remember the information that is presented first.
2. Use the phrase “This is very important…” when discussing key points because patients will remember things that are perceived as important.
3. Deliver simple, clear, and concrete instructions; patients are more likely to forget complex or confusing instructions. For example, “Check your blood glucose every morning within five minutes of waking up and before you eat breakfast” is more specific and easier to follow than “Check your blood glucose”.
4. Ask open-ended questions to allow patients to verbalize feelings or concerns about their diabetes self-care.
5.  Employ MI techniques to help patients who are struggling to initiate and adhere to self-care behaviors. MI tools, such as the Readiness Ruler, Self-Evaluation Rulers, Decisional Balance Matrix, and Health Behavior Menu (Figure), may help patients and physicians discuss self-care behaviors during a medical visit [109].
   

– Express empathy by reflective listening and asking patients for permission before offering information or advice about diabetes self-care.

– Roll with resistance by engaging the patient in the process of problem solving rather than opposing a patient’s resistance to change behaviors.

– Develop discrepancy by helping the patient recognize that there is an inconsistency between his/her behavior and personal goals.

– Support self-efficacy by empowering the patient to believe that he/she can change behaviors.

   6. Demonstrate active listening skills by reflecting and summarizing the patient’s statements. Reflecting and summarizing show the patient that the physician has been listening to concerns and understands what the patient is saying. This is also an opportunity to correct any   miscommunications from the visit.

  7. Write down instructions or provide handouts to the patient to help reinforce learning and information retention.

  8. Ask patients to write a list of questions a few days prior to the medical appointment and bring it with them. Patients are more likely to remember information about issues they have previously considered that directly relate to them.

  9. Consider collaborating with community health workers, patient navigators, peer mentors, and other members of the healthcare team to improve communication, diabetes outcomes, and patient satisfaction.

Summary

Physician-patient self-care communication is essential to achieving optimal diabetes outcomes [15,22,33,110] Patients’ ability to inform physicians about their self-care challenges [14], and physicians’ ability to respond to patients’ self-care reports directly and in non-accusatory language, are vital factors in effective diabetes care [45]. Interventions and education that promote open and honest conversations are particularly important given patients’ well-documented struggles achieving self-care and glycemic goals [111] and physicians’ feelings of inadequacy, frustration, and fatigue when they are not making an impact on patients’ outcomes [48,112]. More research is needed to determine the best strategies to improve self-care communication in the physician-patient relationship.

Corresponding author: Elizabeth A. Beverly, PhD, Department of Family Medicine, Ohio University Heritage College of Osteopathic Medicine, Athens, OH 45701, [email protected].

Financial disclosures: None.

Author contributions: drafting of article, EAB, MFW, ABC, KEP, NNI; critical revision of the article, EAB, MFW, ABC, KEP, NNI.

Abstract

• Objective: To summarize the current literature, research findings, and interventions for self-care communication in the physician-patient relationship.
• Methods: Literature review.
• Results: Diabetes management requires patients to follow complex self-care recommendations for nutrition, physical activity, blood glucose monitoring, and medication. Adherence to these recommendations improves glycemic control and mitigates the risk of diabetes complications; however, many patients struggle to follow these behaviors in everyday life. In the physician-patient relationship, self-care communication is largely influenced by interpersonal trust. Physicians need to incorporate interpersonal and relational skills to establish a trusting relationship. Physician-level barriers to self-care communication include lack of time, lack of collaboration and teamwork among health care providers, lack of patients’ access to resources, and lack of psychosocial support for diabetes patients. Among patients, psychosocial barriers and health literacy may affect willingness to discuss self-care. Motivational interviewing techniques may be helpful for improving communication around patient self-management and promotion of healthy behaviors.
• Conclusion: Physicians can assist patients with their diabetes self-care by discussing self-care challenges during medical visits.

Diabetes is one of the most significant and growing chronic health problems in the world, affecting approximately 415 million people [1]. Diabetes is marked by the body’s inability to make insulin as well as the body’s inability to effectively use the insulin it produces [2]. Diagnosis of diabetes has increased sharply in recent decades and is expected to increase even more, with the largest increases in middle- and low-income countries [3]. Diabetes is a leading cause of blindness, kidney failure, myocardial infarction, stroke, and amputation [3], and in 2015 it accounted for 5 million deaths worldwide [1]. Further, diabetes’s costs to society represent 12% ($673 billion) of global health expenditures [1]. By 2040, models predict that 642 million people will be diagnosed with diabetes and costs will continue to grow as the population ages [1]. Thus, prevention of diabetes is the ultimate goal; however, more effective management for individuals already diagnosed with diabetes is critical to reduce the risk of complications and the economic burden of the disease.

Diabetes management requires patients to perform complex self-care regimens, including weight reduction, frequent blood glucose monitoring, taking oral and/or insulin medications, engaging in physical activity, adhering to diabetes nutrition guidelines, and attending clinic appointments [4–9]. These self-care behaviors are critically linked to improved glycemic control, however, integrating them into one’s daily life can be challenging [10–12]. Recent National Health and Nutrition Examination Survey (NHANES) data show that approximately half of adults with diabetes are not meeting recommended goals for diabetes care [13]. Physicians can assist patients with their diabetes self-care by scheduling frequent follow-up visits and discussing self-care challenges with their patients [14].

In this review, we discuss the current literature on physician-patient communication and diabetes self-care. First, we discuss the qualities of an effective physician-patient relationship followed by the importance of self-care communication in diabetes care. Next, we discuss barriers and facilitators to self-care communication. Finally, we review interventions for improving physician-patient communication in diabetes self-care.

Qualities of an Effective Physician-Patient Relationship

Successful diabetes care requires teamwork between physicians and patients [15]. Two components of successful teamwork are physician-patient communication and shared decision-making, both of which have been shown to improve patient satisfaction, adherence to treatment plans and health outcomes [16–23]. In shared decision-making, the physician and patient share medical information [24–26]. Specifically, the physician presents different treatment options to the patient and describes the risks and benefits of each option. Then the patient expresses his or her preferences for treatment to ensure that the care provided aligns with the patient’s values and needs [27]. Thus, shared decision-making in the treatment relationship is predicated on effective communication between the physician and patient [19].

Effective physician-patient communication is supported by continuous care [19,28], a secure attachment style [29, 30], shared goals [19], a mutual understanding of respective roles and tasks [15,31–33], and a bond characterized by liking, confidence, and trust [19,28,31]. Trust is paramount in physician-patient communication. Interpersonal trust and social trust are the 2 predominant types [34]. Interpersonal trust refers to the relationship the patient has with the physician, specifically the confidence the patient has in the physician as well as the responsibility, competence, compassion, and regard the physician has for the patient’s welfare [34–36]. For patients and physicians, interpersonal trust is developed over time with repeated interactions [34–36]. On the other hand, social trust refers to the beliefs of honesty, integrity, and reliability in others [36]. Social trust is influenced by social constructs, including the media and institutions of higher education [36].

In the physician-patient relationship, self-care communication is largely influenced by interpersonal trust. A patient’s trust can be acquired through multiple medical appointments with the physician. Further, how the patient is treated during these appointments as well as how much time and attention the physician invests in the patient’s care influences the level of interpersonal trust. A high level of trust in the relationship can lead to in improvements in adherence to self-care, continuity of care, physician-patient communication, and overall quality of the physician-patient relationship [37–39].

In the diabetes physician-patient relationship, minimal research has explored how trust in one’s physician impacts self-care communication. In a study by Beverly and colleagues, diabetes patients emphasized the importance of a trusting physician-patient relationship for diabetes care [27]. Another study by Ritholz and colleagues found that physicians and patients both stress the importance of developing trust to facilitate self-care communication [40]. Specifically, trust as well as acceptance from the physician contributes to open and honest self-care communication in the physician-patient diabetes relationship[40]. Additional research is needed to determine whether a high level of physician-patient trust is associated with increased self-care behaviors and improved diabetes outcomes over time.

Importance of Diabetes Self-Care Communication

Diabetes self-care communication in the physician-patient relationship increases patient satisfaction, improves adherence to treatment regimens, and leads to better clinical outcomes [22,41–43]. For physicians, effective self-care communication requires the performance of specific communication tasks and behaviors, including collecting a medical history, explaining a diagnosis and prognosis, and providing clear and concise therapeutic instructions [44]. In addition, physicians must incorporate interpersonal and relational skills to establish a trusting relationship [44,45]. Both physicians and patients agree that a trusting treatment relationship is a requirement for open and honest self-care communication [45]. For patients, effective communication necessitates the disclosure of self-care successes and failures [46]. Diabetes patients face challenging self-care regimens, and these challenges can interfere with glycemic control and increase the risk for diabetes complications [47,48]. For this reason, patients must feel comfortable discussing their self-are challenges so that their physician can individualize treatment prescriptions and recommendations, thereby increasing the likelihood of treatment success.

Barriers to Self-Care Communication

Physician-patient self-care communication is essential to improving patient adherence [29,49] yet numerous barriers exist that undermine effective physician-patient self-care communication. From the physician perspective, the most commonly cited barrier to self-care communication is time [50]. A recent study of family medicine practices found that the time physicians spent discussing self-care with their patients varied from 1 to 17 minutes, suggesting that time is a major barrier to self-care communication [51]. Other barriers include lack of collaboration and teamwork among health care providers, lack of patients’ access to resources, and lack of psychosocial support for patients with diabetes [50]. Relatedly, Beverly and colleagues [52] found that physicians often feel inadequately trained to address diabetes patients’ psychosocial issues and this perceived lack of expertise may contribute to physicians feeling overwhelmed and frustrated within the physician-patient relationship, which may hinder open self-care communication.

For patients, barriers tend to differ from those perceived by physicians. A qualitative study using semi-structured interviews with patients and clinicians, and direct observation of clinical encounters at an inner-city family practice training site, revealed different perceptions of the term “control” between physicians and patients. In practice, physicians used the term “control” to focus on the management of blood glucose levels rather than trying to understand the patients’ understanding of diabetes and subsequent treatment goals. Differing viewpoints contributed to frustration and hindered effective communication [53]. In another qualitative study with physicians and patients, both noted that patients were reluctant to discuss self-care for fear being judged or shamed about food intake and weight [45]. This finding was supported in a quantitative follow-up study assessing patient reluctance to discuss self-care. Thirty percent of surveyed patients reported reluctance to discussing self-care with their physicians for fear of being judged, not wanting to disappoint their doctors, guilt, and shame [14]. Interestingly, patients reporting elevated depressive symptoms were more likely to be reluctant to discuss their self-care [14]. Cognitive behavioral changes (eg, cognitive distortions, avoidance behavior, attention deficits) associated with major depression and depressive symptoms may impair patients’ ability to recall self-care information. Also, patients reporting more depressive symptoms may be more socially withdrawn during a medical appointment, and thus less willing to communicate with their physician about self-care.

Other studies found that psychosocial factors such as diabetes distress [54,55] and pessimistic attitudes [56–59], cultural differences [60–66], lack of family and social support [60,67–70], lack of readiness to change behavior [71], introversion and social isolation [72,73], hypo-glycemia fear [74,75] and ineffectual coping styles [76,77] interfere with self-care and glycemic control. Further, low health literacy is associated with difficulty adhering to self-care, particular medication regimens, and negative health outcomes [78].

In summary psychosocial barriers and health literacy may affect a patients’ willingness to discuss self-care during a medical visit. Therefore, routine assessment of psychosocial factors and health literacy may be necessary to address a patient’s barriers to self-care as well as to promote open and honest self-care communication. Interventions and evidenced-based approaches that address psychosocial factors, health literacy, and physician-patient self-care communication are needed.

Facilitators to Self-Care Communication

Despite numerous barriers to self-care communication, several factors promote self-care communication in the physician-patient relationship. For example, direct and non-accusatory communication from physicians as well as providing patients with hope for living with diabetes both support physician-patient self-care communication [45]. A recent systematic review by Sohal and colleagues [79] found that trust in physicians, the use of culturally appropriate exercise and dietary advice, and increasing family involvement improved physician-patient communication and diabetes self-care [79]. Lastly, a study by Schillinger and colleagues [80] found that physician assessment of patient recall and comprehension of new concepts during medical visits improved diabetes outcomes [80].

Patient-Physician Self-Care Communication Interventions

One of the more successful interventions for improving diabetes self-care and patient-physician communication is motivational interviewing (MI). MI is a non-judgmental communication style designed to explore a patient’s intrinsic motivation to change health behaviors [81]. Inherent to MI is the belief that motivation for change is malleable and that it can be transformed in the context of the patient-physician relationship [81]. MI is a patient-centered method designed to empower a patient’s ability and responsibility to make health-related decisions, with the physician supporting the patient’s autonomy in the process [82]. Recent meta-analyses and systematic reviews [83–87] showed that MI interventions improve self-care behaviors and glycemic control in the short-term; long-term effects of MI on self-care and glycemia remain inconclusive. More high-quality research is needed to evaluate the MI training content of these interventions in order to determine its long-term effectiveness and replicate outcomes in various healthcare settings [87].

Other studies not included in the meta-analyses and reviews found MI interventions improved self-care behaviors [88–90], glycemic control [90,91], and quality of life [91]. A qualitative study exploring diabetes patients’ experiences with MI and self-care behaviors revealed that patients’ appreciate when providers initiate discussions that result in new ways of thinking about self-care and promote a sense of well-being in patients [92]. New research utilizing patient navigators to connect diabetes patients’ to their primary care providers showed MI techniques improved patient self-efficacy and glycemic control [93]. Another study, an internet-based incentives study, found that the application of a brief MI interviewing session improved blood glucose monitoring in adolescents with type 1 diabetes [94]. Thus, creative strategies that employ MI techniques in collaboration with other members of the health care team (ie, patient navigation [93], telehealth [89], health coaching [95], internet-based tools [94]) hold promise for improving self-care and patient-physician communication. Increased collaboration with members of the health care team (eg, certified diabetes educators, nurses, dietitians, pharmacists, exercise physiologists), community health workers [96,97] and peer mentors [98,99] may help reinforce messages, promote shared decision-making, improve diabetes outcomes, increase patient satisfaction, and reduce medical costs [100].

Few other interventions have directly addressed physician-patient diabetes self-care communication. One older study examined the effectiveness of an intervention designed to increase of diabetes patients’ involvement in medical decision-making [16]. Patients randomized to the intervention arm participated in a 20-minute session prior to meeting with their physician, in which researchers reviewed their medical chart and used systematic prompts to encourage patients to negotiate medical decisions with their physician. Patients in the control arm received standard educational materials in a session of equal length. Patients in the intervention arm improved glycemia and elicited twice the amount of medical information from their physician compared to controls [16]. These findings suggest that brief interventions prior to medical appointments can improve patient communication, self-care behavior, and in turn, diabetes outcomes [16].

A recent study evaluated the effectiveness of a training program in communication skills for pediatric diabetes care providers in the UK [101, 102]. In this cluster randomized controlled trial, pediatric providers allocated to the Talking Diabetes intervention participated in web-based material and face-to-face seminars designed to prepare providers for constructive self-care conversations with patients as well as skills for promoting behavior change. The psychoeducational training emphasized shared decision-making and utilized motivational interviewing techniques [101]. Twenty-six centers and 693 young people with type 1 diabetes participated in the study [102]. At 12-month follow-up, the Talking Diabetes intervention did not demonstrate improvements in glycemic control. Further, the intervention had a negative effect on patients’ quality of life but a short-term improvement in coping [102]. Interestingly, parents of patients in the intervention arm reported greater continuity of care, which suggests that parents benefited more from the intervention than their children. Future communication interventions targeting the pediatric population should provide ongoing support to children of physicians exposed to interventions such as Talking Diabetes [102].

Currently, 3 ongoing studies aim to improve self-care and clinical outcomes via physician-patient communication interventions. A study by Ricci-Cabello and colleagues [103] aims to improve diabetes self-care by enhancing patient-physician communication in an underserved community of adults with uncontrolled type 2 diabetes. In this 3-arm randomized controlled trial, patients allocated to groups A and B received communication skills training and graphic feedback about glycosylated hemoglobin A_1c levels; patients in group C received usual care. Patients in group B also received telephone reinforcement [103]. The second study, by Billimek and colleagues, aims to improve physician-patient communication about medication regimens via diabetes coaching [104]. In this intervention, 190 Mexican-American adult patients with type 2 diabetes were randomly assigned to complete a Coached Care visit with trained community health workers or a Coached Care visit plus the EMPATHy software toolkit, a computer-based activity with strategies and resources to overcome self-care barriers. The primary endpoints are (1) the development of care plan that addresses everyday barriers to medication adherence and (2) completion of a concrete behavioral goal [104]. Finally, the third study, by Grant and colleagues, aims to improve physician-patient communication via a pre-visit prioritization of diabetes concerns. In this controlled, cluster-randomized, multisite trial, primary care physicians were randomized to the Pre-Visit Prioritization for Complex Patients with Diabetes or the control group [105]. The Pre-Visit Prioritization IT-tool is designed to help patients identify one or two concerns prior to a medical visit and then send these priorities to the primary care physician via an electronic health record. The overall goal of the intervention is to improve communication of self-care concerns during a medical visit [105]. Findings from these 3 interventions are forthcoming; findings may provide evidence for validated interventions that improve physician-patient self-care communication in diabetes.

Techniques to Improve Self-Care Communication

Incorporating communication skills in continuing medical education and diabetes education may improve self-care communication in the physician-patient relationship. Educational programs that teach physicians how to provide consistent messages, repeat information, reinforce and offer feedback regarding specific self-care behaviors, and problem-solve self-care challenges may improve patients’ willingness to discuss self-care [14,106]. Most patients will remember only a small portion of the information given to them during medical visit. Studies that compare how much information patients retain versus how much information physicians provide show that patients forget 31% to 71% of information [107]. Therefore, physicians need techniques that promote open self-care communication during a visit. The following techniques can help physicians improve self-care communication [108]:

1. Discuss the most important self-care information first; patients tend to remember the information that is presented first.
2. Use the phrase “This is very important…” when discussing key points because patients will remember things that are perceived as important.
3. Deliver simple, clear, and concrete instructions; patients are more likely to forget complex or confusing instructions. For example, “Check your blood glucose every morning within five minutes of waking up and before you eat breakfast” is more specific and easier to follow than “Check your blood glucose”.
4. Ask open-ended questions to allow patients to verbalize feelings or concerns about their diabetes self-care.
5.  Employ MI techniques to help patients who are struggling to initiate and adhere to self-care behaviors. MI tools, such as the Readiness Ruler, Self-Evaluation Rulers, Decisional Balance Matrix, and Health Behavior Menu (Figure), may help patients and physicians discuss self-care behaviors during a medical visit [109].
   

– Express empathy by reflective listening and asking patients for permission before offering information or advice about diabetes self-care.

– Roll with resistance by engaging the patient in the process of problem solving rather than opposing a patient’s resistance to change behaviors.

– Develop discrepancy by helping the patient recognize that there is an inconsistency between his/her behavior and personal goals.

– Support self-efficacy by empowering the patient to believe that he/she can change behaviors.

   6. Demonstrate active listening skills by reflecting and summarizing the patient’s statements. Reflecting and summarizing show the patient that the physician has been listening to concerns and understands what the patient is saying. This is also an opportunity to correct any   miscommunications from the visit.

  7. Write down instructions or provide handouts to the patient to help reinforce learning and information retention.

  8. Ask patients to write a list of questions a few days prior to the medical appointment and bring it with them. Patients are more likely to remember information about issues they have previously considered that directly relate to them.

  9. Consider collaborating with community health workers, patient navigators, peer mentors, and other members of the healthcare team to improve communication, diabetes outcomes, and patient satisfaction.

Summary

Physician-patient self-care communication is essential to achieving optimal diabetes outcomes [15,22,33,110] Patients’ ability to inform physicians about their self-care challenges [14], and physicians’ ability to respond to patients’ self-care reports directly and in non-accusatory language, are vital factors in effective diabetes care [45]. Interventions and education that promote open and honest conversations are particularly important given patients’ well-documented struggles achieving self-care and glycemic goals [111] and physicians’ feelings of inadequacy, frustration, and fatigue when they are not making an impact on patients’ outcomes [48,112]. More research is needed to determine the best strategies to improve self-care communication in the physician-patient relationship.

Corresponding author: Elizabeth A. Beverly, PhD, Department of Family Medicine, Ohio University Heritage College of Osteopathic Medicine, Athens, OH 45701, [email protected].

Financial disclosures: None.

Author contributions: drafting of article, EAB, MFW, ABC, KEP, NNI; critical revision of the article, EAB, MFW, ABC, KEP, NNI.

NEW ORLEANS – A couple of home nursing visits early after bariatric surgery halved emergency department visits and hospital readmissions within the first 30 days in a case-control study, Linden A. Karas, MD, reported at Obesity Week 2016.

“Home nursing visits during the month following surgery, between doctor’s office visits, are a simple and inexpensive intervention that drastically decreases hospital revisits,” she declared at the meeting presented by the Obesity Society and the American Society for Metabolic and Bariatric Surgery.

Bruce Jancin/Frontline Medical News

NEW ORLEANS – A couple of home nursing visits early after bariatric surgery halved emergency department visits and hospital readmissions within the first 30 days in a case-control study, Linden A. Karas, MD, reported at Obesity Week 2016.

“Home nursing visits during the month following surgery, between doctor’s office visits, are a simple and inexpensive intervention that drastically decreases hospital revisits,” she declared at the meeting presented by the Obesity Society and the American Society for Metabolic and Bariatric Surgery.

Bruce Jancin/Frontline Medical News

NEW ORLEANS – A couple of home nursing visits early after bariatric surgery halved emergency department visits and hospital readmissions within the first 30 days in a case-control study, Linden A. Karas, MD, reported at Obesity Week 2016.

“Home nursing visits during the month following surgery, between doctor’s office visits, are a simple and inexpensive intervention that drastically decreases hospital revisits,” she declared at the meeting presented by the Obesity Society and the American Society for Metabolic and Bariatric Surgery.

Bruce Jancin/Frontline Medical News

From the Department of Psychology, University of Sheffield, Sheffield, UK. 

Abstract

• Objective: To present current research and theory on the potential of self-compassion for improving health-related outcomes in chronic illness, and make recommendations for the application of self-compassion interventions in clinical care to improve well-being and facilitate self-management of health in patients with chronic illness.
• Methods: Narrative review of the literature.
• Results: Current theory indicates that the self-kindness, common humanity, and mindfulness components of self-compassion can foster adaptive responses to the perceived setbacks and shortcomings that people experience in the context of living with a chronic illness. Research on self-compassion in relation to health has been examined primarily within non-medical populations. Cross-sectional and experimental studies have demonstrated clear links between self-compassion and lower levels of both perceived stress and physiological indictors of stress. A growing evidence base also indicates that self-compassion is associated with more frequent practice of health-promoting behaviors in healthy populations. Research on self-compassion with chronic illness populations is limited but has demonstrated cross-sectional links to adaptive coping, lower stress and distress, and the practice of important health behaviors. There are several interventions for increasing self-compassion in clinical settings, with limited data suggesting beneficial effects for clinical populations.
• Conclusion: Self-compassion holds promise as an important quality to cultivate to enhance health-related outcomes in those with chronic health conditions. Further systematic and rigorous research evaluating the effectiveness of self-compassion interventions in chronic illness populations is warranted to fully understand the role of this quality for chronic illness care.

Living with a chronic illness presents a number of challenges that can take a toll on both physical and psychological well-being. Pain, fatigue, and decreased daily functioning are symptoms common to many chronic illnesses that can negatively impact psychological well-being by creating uncertainty about attaining personal goals [1], and contributing to doubts and concerns about being able to fulfil one’s personal and work-related responsibilities [2]. The stress associated with negotiating the challenges of chronic illness can further complicate adjustment by exacerbating existing symptoms via stress-mediated and inflammation regulation pathways [3–5] and compromising the practice of important disease management and health maintenance behaviors [6,7]. These experiences can in turn fuel self-blame and other negative self-evaluations about not being able to meet personal and others’ expectations about managing one’s illness and create a downward spiral of poor adjustment and well-being [8,9].

A growing evidence base suggests that self-compassion is an important quality to help manage the stress and behavior-related issues that can compromise chronic illness care. Defined by Neff [10] as taking a kind, accepting, and non-judgmental stance towards oneself in times of failure or difficulty, self-compassion is associated with several indicators of adjustment in non-medical populations including resilience [11,12] and adaptive coping [13]. In support of the notion that self-compassion can play a role in promoting health behaviors, a recent meta-analysis found that self-compassion is linked to better practice of a range of health-promoting behaviors due in part to its links to adaptive emotions [14]. Research on the role of self-compassion for health-related outcomes with chronic illness populations is limited but nonetheless promising [15–17] , and suggests that self-compassion may be a worthwhile quality to cultivate to improve well-being and facilitate disease self-management.

In this article we present current research and theory on the potential of self-compassion as a clinical concept for improving health-related outcomes in chronic illness. After presenting a brief overview of the theoretical underpinnings of self-compassion and its measurement, we present the current state of research on the role of self-compassion in reducing stress and facilitating health behaviors in general medical populations. We then outline the emerging evidence illustrating a potential role for extending this research to chronic illness populations and make recommendations for the application of self-compassion interventions in clinical care, as a means to improving well-being and facilitating self-management of health for this group.

Self-Compassion: A Healthier Way of Responding to Challenges

Research into the correlates and effects of self-compassion has been primarily guided by the model of self-compassion proposed by Kristen Neff [10]. This view of self-compassion is derived from Buddhist psychology and reconceptualised in a secular manner to refer to the compassion expressed towards the self when experiencing suffering, whether it be due to circumstances beyond one’s control or within one’s control [18]. The 3 key components of self-compassion are proposed to work synergistically to promote kind rather than critical responses to failures and difficult circumstances. Self-kindness (versus self-judgment) involves taking a kind, caring and non-evaluative stance towards perceived inadequacies, shortcomings, and mistakes, and may be particularly valuable for countering the negative self-evaluations that can accompany not being able to meet one’s expectations due to the restrictions of living with a chronic condition [9]. Common humanity (versus isolation) refers to the sense of connection to others that arises from acknowledging the common human experience of imperfection and making mistakes, and being more aware that others may face similar challenging circumstances [18]. Framing hardship from this perspective can help people let go of the “why me?” view of their illness which can compromise adjustment [19], and instead foster a greater connection with others who live with similar conditions. Mindfulness (versus over identification) is the final component of self-compassion as conceptualised by Neff [10], and refers to taking a balanced and non-judgmental view of emotional experiences, grounding them in the present moment and neither ignoring nor becoming overly embroiled in the negative feelings that accompany painful experiences. Neff [10,18] proposes that mindfulness helps counteract the over-identification with one’s suffering that can reduce objectivity and taking a larger perspective on the situation. This mindful stance may be particularly beneficial for dealing with the ongoing pain and suffering of living with a chronic health condition, and encourage healthier ways of viewing the limitations associated with chronic illness. Correlational evidence from a study of healthy students further suggests that certain individual components of self-compassion may be particularly beneficial in the context of health, as the self-kindness and common humanity components were each found to be linked to better physical health and managing life stressors [20].

Although there are other conceptualizations of self-compassion [21], this 3-faceted model is the most widely used in research, in part because of the availability of a measure, the Self-compassion Scale [22], which explicitly assesses each of the facets of self-compassion. The 26-item scale is designed to assess positive and negative dimensions of each facet of self-compassion, but the total score is used more often than the separate subscales [23]. The measure assesses dispositional or trait self-compassion, with an underlying assumption that some individuals can be more or less self-compassionate in the way they regularly respond to challenges or failures. Importantly, self-compassion can also be prompted or fostered as a way of responding to failures and challenges, presenting the possibility that self-compassion can be increased among those who may benefit the most from responding with greater self-kindness and less self-judgement [24–26].

Whether conceived of as a momentary state or as an enduring quality, self-compassion has demonstrated consistent links with an array of indicators of psychological well-being. For example, one meta-analysis found that self-compassion is robustly and negatively linked with psychopathology (average r = –0.54), including depression and anxiety [27], 2 mental health issues that are prevalent in chronic illness populations [28,29]. Several studies have also noted associations of self-compassion with emotional resilience [18,30], and better coping and lower stress [12,13].

Self-Compassion Is Associated with Lower Perceived Stress

Relevant for our focus on chronic illness care, there is some evidence that self-compassion can be effective for improving well-being, and reducing stress in particular, in people with chronic illness. Across two illness samples, cancer and mixed chronic illnesses, those who scored low on a measure of self-compassion had higher levels of depression and stress compared to a healthy control sample [15], suggesting self-compassion may be protective against poor adjustment. Similar results have been found for breast cancer patients, with self-compassion explaining lower distress related to body image [16], and HIV patients, with self-compassion linked to lower stress, anxiety, and shame [31].

The protective role of self-compassion for stress appears to be explained primarily by the set of coping strategies that self-compassionate people use to deal with challenging circumstances. In their review, Allen and Leary [13] noted that self-compassionate people use coping styles that are adaptive and problem-focused (e.g., planning, social-support-seeking, and positive reframing), and tend to not use maladaptive coping styles (e.g., cognitively or behaviorally disengaging from the stressor and other escape-avoidance coping). Consistent with appraisal-based models of coping [32], adaptive coping strategies focus on removing the stressful event, garnering resources to better deal with the stressor, or recasting the stressor as less threatening, and therefore are instrumental in reducing the levels of stress that might normally be perceived in the absence of such coping approaches. Having access to a repertoire of adaptive coping strategies is particularly important in the context of chronic illness which can present a variety of daily challenges related to pain, functional and psychosocial limitations that require a flexible approach to changing demands.

Self-compassion with its links to adaptive coping may be particularly relevant for coping with such demands. One study put this assertion to the test by examining the role of coping strategies in explaining the link between self-compassion and stress in two chronic illness samples, inflammatory bowel disease (IBD) and arthritis [17]. In both samples, higher trait self-compassion was associated with a set of adaptive coping strategies which in turn explained greater coping efficacy and lower perceived stress, with the overall model explaining 43% of the variance in stress after controlling for health status and disease duration. Key adaptive coping strategies included greater use of active coping (a problem-focused coping strategy aimed at removing or reducing the stressor), positive reframing, and acceptance. The self-compassion–stress link was also explained in part by less use of maladaptive strategies, including denial, behavioral disengagement, and self-blame coping [17]. The latter coping strategy in particular is linked to poor adjustment in chronic illness as it reflects efforts to take control over uncontrollable symptoms by viewing illness-related changes, such as flare-ups, as a personal failure to manage one’s illness [9,33]. Together these findings, which were remarkably consistent across 2 distinct chronic illness groups, provide solid evidence to suggest that self-compassion provides individuals living with a chronic illness with a coping advantage that fosters adjustment through engaging in appropriate cognitive and behavioral coping strategies to minimize perceived stress.

Self-Compassion Can Reduce Physiological Stress

A caveat regarding the research to date on self-compassion and stress in chronic illness is that all studies are cross-sectional, which limits any conclusions about the direction of causality. Ignoring the fact that self-compassion in each of these studies was assessed as a relatively stable trait-like quality, one could argue that individuals who are less stressed have a greater opportunity to express kindness to themselves as they are not pre-occupied with illness-related demands and challenges. However, emerging research on self-compassion and the physiological correlates of stress provide a compelling case for the directionality assumed in the cross-sectional research. In one study, healthy young adults were subjected to a standard stress-inducing laboratory task (involving mental mathematics and public speaking), with plasma concentrations of the pro-inflammatory cytokine, interleukin-6 (IL-6), assessed before and after the task on 2 days [34]. Those with higher trait self-compassion responded to the stress task with significantly lower IL-6 levels even after controlling for other potential confounds such as demographics, self-esteem, depressive symptoms, and distress. Self-compassion was also linked to lower baseline levels of IL-6 on both days. These findings suggest that self-compassion may be both an enduring and response-specific protective factor against stress-induced inflammation.

There is also evidence supporting the efficacy of self-compassion interventions for reducing stress. In a study of healthy young women, those who underwent a brief training in self-compassion were found to have lower sympathetic nervous system reactivity (salivary alpha-amylase), and more adaptive parasympathetic nervous system reactivity (heart rate variability) in response to a stress-inducing lab task, compared to placebo control and no-training control groups [35]. That this study was conducted with women only is notable, as research indicates that women tend to have lower levels of self-compassion compared to men [18]. Together with the study on trait self-compassion and biomarkers of stress-induced inflammation, this research provides supportive evidence for the role of self-compassion in reducing the harmful physiological effects of stress. Self-compassion may therefore be particularly beneficial for both psychological and physical well-being in chronic illness given the known and negative impact of stress on symptoms for a number of chronic illnesses such as diabetes [36], cardiovascular disease [32], arthritis [4], and IBD [38].

Self-Compassion and the Regulation of Health Behaviors

Another key role for self-compassion in chronic illness care is through the facilitation of health-promoting behaviors. Health maintenance and disease management behaviors, such as getting diagnostic tests, taking medication, and weight management, are central for managing symptoms and minimizing the risk of disease progression or complications. For example, staying physically fit, maintaining a healthy diet, managing stress, and getting adequate sleep are critical for weight management and the behavioral control of symptoms for a number of chronic diseases [39,40]. Nonetheless, weight management behaviors often require initiating significant lifestyle changes which need to be maintained in order to be effective. Such behaviors can be particularly challenging for individuals with chronic illness symptoms such as pain and fatigue, which can present significant barriers [41] and trigger self-critical coping about not being able to adequately self-care or manage one’s disease [8,9]. Rather than being motivating, theory and evidence indicate that negative evaluations tend to increase stress and promote procrastination of important health behaviors [7,42].

In addition to theory noting why self-compassion may facilitate the regulation of important health behaviors [43,44], there is now a burgeoning body of research supporting the beneficial role of self-compassion in health behaviors [12,43,45]. Each of the 3 components of self-compassion (self-kindness, common humanity, and mindfulness) are posited to facilitate adaptive self-regulatory responses to the inevitable and momentary failures that occur when people try to enact their health goals. For example, not following through with dietary recommendations and giving into temptation can result in feelings of shame, negative self-evaluations, and reactive eating [46], which in turn can result in discontinuation of one’s diet. These minor failures would be viewed less negatively by people who are self-compassionate, because they realise that others have made similar mistakes (common humanity) and, therefore, do not become excessively self-critical (self-kindness) or immersed in feelings of guilt, shame or frustration (mindfulness), negative emotions which are known to interfere with self-regulation [43,47]. Indeed, self-compassion is associated with having fewer negative reactions in response to imagining a scenario in which a diet goal is transgressed [48].

There is also evidence that collectively, these components of self-compassion facilitate experiencing a healthy balance of positive and negative emotions in the context of health behavior change. Self-compassion appears to temper the negative responses to minor setbacks and failures that occur whilst trying to reach health goals, and foster the positive emotions required to maintain motivation during the pursuit of health goals. The most compelling support for this proposition comes from a meta-analysis of 15 samples (n = 3252) in which self-compassion was consistently and positively (average r = 0.25) associated with the practice of a range of health-promoting behaviors relevant for chronic illness care, including healthy eating, regular exercise, healthy sleep behaviors, and stress management [12]. The explanatory roles of positive and negative affect were also tested, with the results indicating that higher levels of positive affect and lower levels of negative affect were significant mediators of the link between self-compassion and health behaviors.

With respect to mood regulation, it is important to note that self-compassion is not simply an optimistic bias that predisposes individuals towards responding only in a positive way to perceived failures or setbacks. Rather, self-compassion fosters taking a balanced perspective on one’s failures, recognizing both the positive and negative aspects, and harnessing the negative mood that arises from a state of discrepancy to motivate self-improvement. For example, in experimental studies, both enduring and momentary self-compassionate states are associated with increased self-improvement motivation and behavior after experiencing failure and regret [49,50], in part because self-compassion fosters personal acceptance [50]. This adaptive responding can translate into better adherence and health behaviors in chronic health conditions after lapses in self-care which might otherwise foster self-criticism and poor disease management. Preliminary evidence from the author’s lab supports this proposition, as self-compassion was positively associated with both treatment adherence and the practice of wellness behaviors, due in part to lower levels of perceived stress, in samples of cancer patients and survivors [51], and people with chronic fatigue syndrome [52].

Clinical Applications of Self-Compassion for Chronic Illness Care

Given the growing evidence linking self-compassion to well-being and health behaviors, the next logical step is to consider ways of cultivating self-compassion for those individuals experiencing chronic health conditions.

Training in mindfulness might be one way to foster self-compassion within a health care setting. Mindfulness-Based Cognitive Behavior Therapy (MBCT [53]), and Mindfulness-Based Stress Reduction (MBSR [54]), are both programs that use mindfulness skills to notice distressing thoughts and feelings, hold these experiences in awareness, and cultivate acceptance and self-compassion [53]. MBSR, usually delivered as an 8-week group-based program, has been found to have significant effects on depression, anxiety and psychological distress in people with chronic somatic diseases [55]. However, fostering self-compassion forms only part of MBCT and MBSR. Indeed there are very few therapeutic interventions that specifically and primarily target self-compassion; however, where they are used they show promise.

Compassionate Mind Training (CMT [24]), Compassion-Focused Therapy (CFT [21]), and the Mindful Self-Compassion program [26] are examples of such targeted interventions. These therapeutic models, again usually delivered in group settings, aim to foster a kinder and more accepting attitude towards oneself through the use of formal meditations (such as living kindness meditation; LKM), home practice and informal practices for daily life (such as self-compassionate letter writing), and have been demonstrated to be effective with, for example, community participants [26], people who hear malevolent voices [56], and those with chronic mood difficulties [24].

Additionally, there are a number of brief self-compassion practices that have been evaluated as an intervention in their own right and demonstrate positive effects. LKM aiming to develop a state of unconditional kindness towards both oneself and others and compassion meditation (CM [57]), are the most commonly described. CM involves techniques to cultivate compassion, or deep, genuine sympathy for those stricken by misfortune, including oneself, “together with an earnest wish to ease this suffering” [58]. The effects of these kindness-based meditations on health and well-being have been summarized in a recent review [59] which illustrates that, whilst limited data exists currently, promising effects have been shown for a number of different groups. Positive effects have for example been demonstrated for patients with chronic back pain [60] and for people with experiences traditionally conceptualized as psychosis [61], suggesting these practice may also be beneficial for other chronic health conditions.

Alongside the potential benefits, how interventions cultivating self-compassion can be delivered in clinical practice is worthy of consideration. Previous applications have included group work (including MBCT, MBSR), one-to-one therapy (such as CFT) and self-directed practice via bibliotherapy or online materials. The different options available here suggest this kind of intervention is highly accessible, potentially inexpensive and could be used as a complimentary approach alongside other more traditional medical disease management treatments or as a stand-alone psychotherapeutic intervention when required.

In order to best support the successful introduction and evaluation of such interventions, consideration of compassionate practice by staff within health-care settings is also needed. Cultivating a culture of compassion through compassionate leadership [62] is required. We know services with higher levels of caring practice have higher quality care, greater well-being for staff and in turn more compassionate care for patients [63] than those services that are struggling. It is hoped that taking a broad systemic compassionate approach (via training, ongoing supervision and ethos cultivation) would ensure that the language used, information communicated, and disease management approaches are planned and delivered in a way that fosters patients’ sense of self-efficacy and kindness towards themselves, with all the benefits outlined above.

Conclusion

Theory and research indicate that self-compassion fosters adaptive responses to perceived failures and setbacks, and is therefore associated with well-being, reduced stress and more frequent health behaviors. The emerging evidence base on the benefits of self-compassion for coping with the challenges of chronic health conditions is promising, and suggests that the benefits of self-compassion noted in non-medical populations may extend to chronic illness care. Interventions cultivating self-compassion may be especially beneficial for those with chronic health conditions through the mechanisms identified earlier; reducing stress (and thereby impacting on an individual’s relationship with their physical health); improving self-management skills with condition related behaviors and health-promoting behaviors; altering one’s relationship with illness-related shame and self-blame; and in boosting resilience. Systematic and rigorous evaluation of such interventions with people with chronic health conditions is now needed, evaluating impacts on well-being, health behaviors, and disease management and outcomes.

Corresponding author: Fuschia M. Sirois, Dept. of Psychology, University of Sheffield, 1 Vicar Lane, Sheffeld, S1 1HD, [email protected].

Fianacial disclosures: None.

From the Department of Psychology, University of Sheffield, Sheffield, UK. 

Abstract

• Objective: To present current research and theory on the potential of self-compassion for improving health-related outcomes in chronic illness, and make recommendations for the application of self-compassion interventions in clinical care to improve well-being and facilitate self-management of health in patients with chronic illness.
• Methods: Narrative review of the literature.
• Results: Current theory indicates that the self-kindness, common humanity, and mindfulness components of self-compassion can foster adaptive responses to the perceived setbacks and shortcomings that people experience in the context of living with a chronic illness. Research on self-compassion in relation to health has been examined primarily within non-medical populations. Cross-sectional and experimental studies have demonstrated clear links between self-compassion and lower levels of both perceived stress and physiological indictors of stress. A growing evidence base also indicates that self-compassion is associated with more frequent practice of health-promoting behaviors in healthy populations. Research on self-compassion with chronic illness populations is limited but has demonstrated cross-sectional links to adaptive coping, lower stress and distress, and the practice of important health behaviors. There are several interventions for increasing self-compassion in clinical settings, with limited data suggesting beneficial effects for clinical populations.
• Conclusion: Self-compassion holds promise as an important quality to cultivate to enhance health-related outcomes in those with chronic health conditions. Further systematic and rigorous research evaluating the effectiveness of self-compassion interventions in chronic illness populations is warranted to fully understand the role of this quality for chronic illness care.

Living with a chronic illness presents a number of challenges that can take a toll on both physical and psychological well-being. Pain, fatigue, and decreased daily functioning are symptoms common to many chronic illnesses that can negatively impact psychological well-being by creating uncertainty about attaining personal goals [1], and contributing to doubts and concerns about being able to fulfil one’s personal and work-related responsibilities [2]. The stress associated with negotiating the challenges of chronic illness can further complicate adjustment by exacerbating existing symptoms via stress-mediated and inflammation regulation pathways [3–5] and compromising the practice of important disease management and health maintenance behaviors [6,7]. These experiences can in turn fuel self-blame and other negative self-evaluations about not being able to meet personal and others’ expectations about managing one’s illness and create a downward spiral of poor adjustment and well-being [8,9].

A growing evidence base suggests that self-compassion is an important quality to help manage the stress and behavior-related issues that can compromise chronic illness care. Defined by Neff [10] as taking a kind, accepting, and non-judgmental stance towards oneself in times of failure or difficulty, self-compassion is associated with several indicators of adjustment in non-medical populations including resilience [11,12] and adaptive coping [13]. In support of the notion that self-compassion can play a role in promoting health behaviors, a recent meta-analysis found that self-compassion is linked to better practice of a range of health-promoting behaviors due in part to its links to adaptive emotions [14]. Research on the role of self-compassion for health-related outcomes with chronic illness populations is limited but nonetheless promising [15–17] , and suggests that self-compassion may be a worthwhile quality to cultivate to improve well-being and facilitate disease self-management.

In this article we present current research and theory on the potential of self-compassion as a clinical concept for improving health-related outcomes in chronic illness. After presenting a brief overview of the theoretical underpinnings of self-compassion and its measurement, we present the current state of research on the role of self-compassion in reducing stress and facilitating health behaviors in general medical populations. We then outline the emerging evidence illustrating a potential role for extending this research to chronic illness populations and make recommendations for the application of self-compassion interventions in clinical care, as a means to improving well-being and facilitating self-management of health for this group.

Self-Compassion: A Healthier Way of Responding to Challenges

Research into the correlates and effects of self-compassion has been primarily guided by the model of self-compassion proposed by Kristen Neff [10]. This view of self-compassion is derived from Buddhist psychology and reconceptualised in a secular manner to refer to the compassion expressed towards the self when experiencing suffering, whether it be due to circumstances beyond one’s control or within one’s control [18]. The 3 key components of self-compassion are proposed to work synergistically to promote kind rather than critical responses to failures and difficult circumstances. Self-kindness (versus self-judgment) involves taking a kind, caring and non-evaluative stance towards perceived inadequacies, shortcomings, and mistakes, and may be particularly valuable for countering the negative self-evaluations that can accompany not being able to meet one’s expectations due to the restrictions of living with a chronic condition [9]. Common humanity (versus isolation) refers to the sense of connection to others that arises from acknowledging the common human experience of imperfection and making mistakes, and being more aware that others may face similar challenging circumstances [18]. Framing hardship from this perspective can help people let go of the “why me?” view of their illness which can compromise adjustment [19], and instead foster a greater connection with others who live with similar conditions. Mindfulness (versus over identification) is the final component of self-compassion as conceptualised by Neff [10], and refers to taking a balanced and non-judgmental view of emotional experiences, grounding them in the present moment and neither ignoring nor becoming overly embroiled in the negative feelings that accompany painful experiences. Neff [10,18] proposes that mindfulness helps counteract the over-identification with one’s suffering that can reduce objectivity and taking a larger perspective on the situation. This mindful stance may be particularly beneficial for dealing with the ongoing pain and suffering of living with a chronic health condition, and encourage healthier ways of viewing the limitations associated with chronic illness. Correlational evidence from a study of healthy students further suggests that certain individual components of self-compassion may be particularly beneficial in the context of health, as the self-kindness and common humanity components were each found to be linked to better physical health and managing life stressors [20].

Although there are other conceptualizations of self-compassion [21], this 3-faceted model is the most widely used in research, in part because of the availability of a measure, the Self-compassion Scale [22], which explicitly assesses each of the facets of self-compassion. The 26-item scale is designed to assess positive and negative dimensions of each facet of self-compassion, but the total score is used more often than the separate subscales [23]. The measure assesses dispositional or trait self-compassion, with an underlying assumption that some individuals can be more or less self-compassionate in the way they regularly respond to challenges or failures. Importantly, self-compassion can also be prompted or fostered as a way of responding to failures and challenges, presenting the possibility that self-compassion can be increased among those who may benefit the most from responding with greater self-kindness and less self-judgement [24–26].

Whether conceived of as a momentary state or as an enduring quality, self-compassion has demonstrated consistent links with an array of indicators of psychological well-being. For example, one meta-analysis found that self-compassion is robustly and negatively linked with psychopathology (average r = –0.54), including depression and anxiety [27], 2 mental health issues that are prevalent in chronic illness populations [28,29]. Several studies have also noted associations of self-compassion with emotional resilience [18,30], and better coping and lower stress [12,13].

Self-Compassion Is Associated with Lower Perceived Stress

Relevant for our focus on chronic illness care, there is some evidence that self-compassion can be effective for improving well-being, and reducing stress in particular, in people with chronic illness. Across two illness samples, cancer and mixed chronic illnesses, those who scored low on a measure of self-compassion had higher levels of depression and stress compared to a healthy control sample [15], suggesting self-compassion may be protective against poor adjustment. Similar results have been found for breast cancer patients, with self-compassion explaining lower distress related to body image [16], and HIV patients, with self-compassion linked to lower stress, anxiety, and shame [31].

The protective role of self-compassion for stress appears to be explained primarily by the set of coping strategies that self-compassionate people use to deal with challenging circumstances. In their review, Allen and Leary [13] noted that self-compassionate people use coping styles that are adaptive and problem-focused (e.g., planning, social-support-seeking, and positive reframing), and tend to not use maladaptive coping styles (e.g., cognitively or behaviorally disengaging from the stressor and other escape-avoidance coping). Consistent with appraisal-based models of coping [32], adaptive coping strategies focus on removing the stressful event, garnering resources to better deal with the stressor, or recasting the stressor as less threatening, and therefore are instrumental in reducing the levels of stress that might normally be perceived in the absence of such coping approaches. Having access to a repertoire of adaptive coping strategies is particularly important in the context of chronic illness which can present a variety of daily challenges related to pain, functional and psychosocial limitations that require a flexible approach to changing demands.

Self-compassion with its links to adaptive coping may be particularly relevant for coping with such demands. One study put this assertion to the test by examining the role of coping strategies in explaining the link between self-compassion and stress in two chronic illness samples, inflammatory bowel disease (IBD) and arthritis [17]. In both samples, higher trait self-compassion was associated with a set of adaptive coping strategies which in turn explained greater coping efficacy and lower perceived stress, with the overall model explaining 43% of the variance in stress after controlling for health status and disease duration. Key adaptive coping strategies included greater use of active coping (a problem-focused coping strategy aimed at removing or reducing the stressor), positive reframing, and acceptance. The self-compassion–stress link was also explained in part by less use of maladaptive strategies, including denial, behavioral disengagement, and self-blame coping [17]. The latter coping strategy in particular is linked to poor adjustment in chronic illness as it reflects efforts to take control over uncontrollable symptoms by viewing illness-related changes, such as flare-ups, as a personal failure to manage one’s illness [9,33]. Together these findings, which were remarkably consistent across 2 distinct chronic illness groups, provide solid evidence to suggest that self-compassion provides individuals living with a chronic illness with a coping advantage that fosters adjustment through engaging in appropriate cognitive and behavioral coping strategies to minimize perceived stress.

Self-Compassion Can Reduce Physiological Stress

A caveat regarding the research to date on self-compassion and stress in chronic illness is that all studies are cross-sectional, which limits any conclusions about the direction of causality. Ignoring the fact that self-compassion in each of these studies was assessed as a relatively stable trait-like quality, one could argue that individuals who are less stressed have a greater opportunity to express kindness to themselves as they are not pre-occupied with illness-related demands and challenges. However, emerging research on self-compassion and the physiological correlates of stress provide a compelling case for the directionality assumed in the cross-sectional research. In one study, healthy young adults were subjected to a standard stress-inducing laboratory task (involving mental mathematics and public speaking), with plasma concentrations of the pro-inflammatory cytokine, interleukin-6 (IL-6), assessed before and after the task on 2 days [34]. Those with higher trait self-compassion responded to the stress task with significantly lower IL-6 levels even after controlling for other potential confounds such as demographics, self-esteem, depressive symptoms, and distress. Self-compassion was also linked to lower baseline levels of IL-6 on both days. These findings suggest that self-compassion may be both an enduring and response-specific protective factor against stress-induced inflammation.

There is also evidence supporting the efficacy of self-compassion interventions for reducing stress. In a study of healthy young women, those who underwent a brief training in self-compassion were found to have lower sympathetic nervous system reactivity (salivary alpha-amylase), and more adaptive parasympathetic nervous system reactivity (heart rate variability) in response to a stress-inducing lab task, compared to placebo control and no-training control groups [35]. That this study was conducted with women only is notable, as research indicates that women tend to have lower levels of self-compassion compared to men [18]. Together with the study on trait self-compassion and biomarkers of stress-induced inflammation, this research provides supportive evidence for the role of self-compassion in reducing the harmful physiological effects of stress. Self-compassion may therefore be particularly beneficial for both psychological and physical well-being in chronic illness given the known and negative impact of stress on symptoms for a number of chronic illnesses such as diabetes [36], cardiovascular disease [32], arthritis [4], and IBD [38].

Self-Compassion and the Regulation of Health Behaviors

Another key role for self-compassion in chronic illness care is through the facilitation of health-promoting behaviors. Health maintenance and disease management behaviors, such as getting diagnostic tests, taking medication, and weight management, are central for managing symptoms and minimizing the risk of disease progression or complications. For example, staying physically fit, maintaining a healthy diet, managing stress, and getting adequate sleep are critical for weight management and the behavioral control of symptoms for a number of chronic diseases [39,40]. Nonetheless, weight management behaviors often require initiating significant lifestyle changes which need to be maintained in order to be effective. Such behaviors can be particularly challenging for individuals with chronic illness symptoms such as pain and fatigue, which can present significant barriers [41] and trigger self-critical coping about not being able to adequately self-care or manage one’s disease [8,9]. Rather than being motivating, theory and evidence indicate that negative evaluations tend to increase stress and promote procrastination of important health behaviors [7,42].

In addition to theory noting why self-compassion may facilitate the regulation of important health behaviors [43,44], there is now a burgeoning body of research supporting the beneficial role of self-compassion in health behaviors [12,43,45]. Each of the 3 components of self-compassion (self-kindness, common humanity, and mindfulness) are posited to facilitate adaptive self-regulatory responses to the inevitable and momentary failures that occur when people try to enact their health goals. For example, not following through with dietary recommendations and giving into temptation can result in feelings of shame, negative self-evaluations, and reactive eating [46], which in turn can result in discontinuation of one’s diet. These minor failures would be viewed less negatively by people who are self-compassionate, because they realise that others have made similar mistakes (common humanity) and, therefore, do not become excessively self-critical (self-kindness) or immersed in feelings of guilt, shame or frustration (mindfulness), negative emotions which are known to interfere with self-regulation [43,47]. Indeed, self-compassion is associated with having fewer negative reactions in response to imagining a scenario in which a diet goal is transgressed [48].

There is also evidence that collectively, these components of self-compassion facilitate experiencing a healthy balance of positive and negative emotions in the context of health behavior change. Self-compassion appears to temper the negative responses to minor setbacks and failures that occur whilst trying to reach health goals, and foster the positive emotions required to maintain motivation during the pursuit of health goals. The most compelling support for this proposition comes from a meta-analysis of 15 samples (n = 3252) in which self-compassion was consistently and positively (average r = 0.25) associated with the practice of a range of health-promoting behaviors relevant for chronic illness care, including healthy eating, regular exercise, healthy sleep behaviors, and stress management [12]. The explanatory roles of positive and negative affect were also tested, with the results indicating that higher levels of positive affect and lower levels of negative affect were significant mediators of the link between self-compassion and health behaviors.

With respect to mood regulation, it is important to note that self-compassion is not simply an optimistic bias that predisposes individuals towards responding only in a positive way to perceived failures or setbacks. Rather, self-compassion fosters taking a balanced perspective on one’s failures, recognizing both the positive and negative aspects, and harnessing the negative mood that arises from a state of discrepancy to motivate self-improvement. For example, in experimental studies, both enduring and momentary self-compassionate states are associated with increased self-improvement motivation and behavior after experiencing failure and regret [49,50], in part because self-compassion fosters personal acceptance [50]. This adaptive responding can translate into better adherence and health behaviors in chronic health conditions after lapses in self-care which might otherwise foster self-criticism and poor disease management. Preliminary evidence from the author’s lab supports this proposition, as self-compassion was positively associated with both treatment adherence and the practice of wellness behaviors, due in part to lower levels of perceived stress, in samples of cancer patients and survivors [51], and people with chronic fatigue syndrome [52].

Clinical Applications of Self-Compassion for Chronic Illness Care

Given the growing evidence linking self-compassion to well-being and health behaviors, the next logical step is to consider ways of cultivating self-compassion for those individuals experiencing chronic health conditions.

Training in mindfulness might be one way to foster self-compassion within a health care setting. Mindfulness-Based Cognitive Behavior Therapy (MBCT [53]), and Mindfulness-Based Stress Reduction (MBSR [54]), are both programs that use mindfulness skills to notice distressing thoughts and feelings, hold these experiences in awareness, and cultivate acceptance and self-compassion [53]. MBSR, usually delivered as an 8-week group-based program, has been found to have significant effects on depression, anxiety and psychological distress in people with chronic somatic diseases [55]. However, fostering self-compassion forms only part of MBCT and MBSR. Indeed there are very few therapeutic interventions that specifically and primarily target self-compassion; however, where they are used they show promise.

Compassionate Mind Training (CMT [24]), Compassion-Focused Therapy (CFT [21]), and the Mindful Self-Compassion program [26] are examples of such targeted interventions. These therapeutic models, again usually delivered in group settings, aim to foster a kinder and more accepting attitude towards oneself through the use of formal meditations (such as living kindness meditation; LKM), home practice and informal practices for daily life (such as self-compassionate letter writing), and have been demonstrated to be effective with, for example, community participants [26], people who hear malevolent voices [56], and those with chronic mood difficulties [24].

Additionally, there are a number of brief self-compassion practices that have been evaluated as an intervention in their own right and demonstrate positive effects. LKM aiming to develop a state of unconditional kindness towards both oneself and others and compassion meditation (CM [57]), are the most commonly described. CM involves techniques to cultivate compassion, or deep, genuine sympathy for those stricken by misfortune, including oneself, “together with an earnest wish to ease this suffering” [58]. The effects of these kindness-based meditations on health and well-being have been summarized in a recent review [59] which illustrates that, whilst limited data exists currently, promising effects have been shown for a number of different groups. Positive effects have for example been demonstrated for patients with chronic back pain [60] and for people with experiences traditionally conceptualized as psychosis [61], suggesting these practice may also be beneficial for other chronic health conditions.

Alongside the potential benefits, how interventions cultivating self-compassion can be delivered in clinical practice is worthy of consideration. Previous applications have included group work (including MBCT, MBSR), one-to-one therapy (such as CFT) and self-directed practice via bibliotherapy or online materials. The different options available here suggest this kind of intervention is highly accessible, potentially inexpensive and could be used as a complimentary approach alongside other more traditional medical disease management treatments or as a stand-alone psychotherapeutic intervention when required.

In order to best support the successful introduction and evaluation of such interventions, consideration of compassionate practice by staff within health-care settings is also needed. Cultivating a culture of compassion through compassionate leadership [62] is required. We know services with higher levels of caring practice have higher quality care, greater well-being for staff and in turn more compassionate care for patients [63] than those services that are struggling. It is hoped that taking a broad systemic compassionate approach (via training, ongoing supervision and ethos cultivation) would ensure that the language used, information communicated, and disease management approaches are planned and delivered in a way that fosters patients’ sense of self-efficacy and kindness towards themselves, with all the benefits outlined above.

Conclusion

Theory and research indicate that self-compassion fosters adaptive responses to perceived failures and setbacks, and is therefore associated with well-being, reduced stress and more frequent health behaviors. The emerging evidence base on the benefits of self-compassion for coping with the challenges of chronic health conditions is promising, and suggests that the benefits of self-compassion noted in non-medical populations may extend to chronic illness care. Interventions cultivating self-compassion may be especially beneficial for those with chronic health conditions through the mechanisms identified earlier; reducing stress (and thereby impacting on an individual’s relationship with their physical health); improving self-management skills with condition related behaviors and health-promoting behaviors; altering one’s relationship with illness-related shame and self-blame; and in boosting resilience. Systematic and rigorous evaluation of such interventions with people with chronic health conditions is now needed, evaluating impacts on well-being, health behaviors, and disease management and outcomes.

Corresponding author: Fuschia M. Sirois, Dept. of Psychology, University of Sheffield, 1 Vicar Lane, Sheffeld, S1 1HD, [email protected].

Fianacial disclosures: None.

From the Department of Psychology, University of Sheffield, Sheffield, UK. 

Abstract

• Objective: To present current research and theory on the potential of self-compassion for improving health-related outcomes in chronic illness, and make recommendations for the application of self-compassion interventions in clinical care to improve well-being and facilitate self-management of health in patients with chronic illness.
• Methods: Narrative review of the literature.
• Results: Current theory indicates that the self-kindness, common humanity, and mindfulness components of self-compassion can foster adaptive responses to the perceived setbacks and shortcomings that people experience in the context of living with a chronic illness. Research on self-compassion in relation to health has been examined primarily within non-medical populations. Cross-sectional and experimental studies have demonstrated clear links between self-compassion and lower levels of both perceived stress and physiological indictors of stress. A growing evidence base also indicates that self-compassion is associated with more frequent practice of health-promoting behaviors in healthy populations. Research on self-compassion with chronic illness populations is limited but has demonstrated cross-sectional links to adaptive coping, lower stress and distress, and the practice of important health behaviors. There are several interventions for increasing self-compassion in clinical settings, with limited data suggesting beneficial effects for clinical populations.
• Conclusion: Self-compassion holds promise as an important quality to cultivate to enhance health-related outcomes in those with chronic health conditions. Further systematic and rigorous research evaluating the effectiveness of self-compassion interventions in chronic illness populations is warranted to fully understand the role of this quality for chronic illness care.

Living with a chronic illness presents a number of challenges that can take a toll on both physical and psychological well-being. Pain, fatigue, and decreased daily functioning are symptoms common to many chronic illnesses that can negatively impact psychological well-being by creating uncertainty about attaining personal goals [1], and contributing to doubts and concerns about being able to fulfil one’s personal and work-related responsibilities [2]. The stress associated with negotiating the challenges of chronic illness can further complicate adjustment by exacerbating existing symptoms via stress-mediated and inflammation regulation pathways [3–5] and compromising the practice of important disease management and health maintenance behaviors [6,7]. These experiences can in turn fuel self-blame and other negative self-evaluations about not being able to meet personal and others’ expectations about managing one’s illness and create a downward spiral of poor adjustment and well-being [8,9].

A growing evidence base suggests that self-compassion is an important quality to help manage the stress and behavior-related issues that can compromise chronic illness care. Defined by Neff [10] as taking a kind, accepting, and non-judgmental stance towards oneself in times of failure or difficulty, self-compassion is associated with several indicators of adjustment in non-medical populations including resilience [11,12] and adaptive coping [13]. In support of the notion that self-compassion can play a role in promoting health behaviors, a recent meta-analysis found that self-compassion is linked to better practice of a range of health-promoting behaviors due in part to its links to adaptive emotions [14]. Research on the role of self-compassion for health-related outcomes with chronic illness populations is limited but nonetheless promising [15–17] , and suggests that self-compassion may be a worthwhile quality to cultivate to improve well-being and facilitate disease self-management.

In this article we present current research and theory on the potential of self-compassion as a clinical concept for improving health-related outcomes in chronic illness. After presenting a brief overview of the theoretical underpinnings of self-compassion and its measurement, we present the current state of research on the role of self-compassion in reducing stress and facilitating health behaviors in general medical populations. We then outline the emerging evidence illustrating a potential role for extending this research to chronic illness populations and make recommendations for the application of self-compassion interventions in clinical care, as a means to improving well-being and facilitating self-management of health for this group.

Self-Compassion: A Healthier Way of Responding to Challenges

Research into the correlates and effects of self-compassion has been primarily guided by the model of self-compassion proposed by Kristen Neff [10]. This view of self-compassion is derived from Buddhist psychology and reconceptualised in a secular manner to refer to the compassion expressed towards the self when experiencing suffering, whether it be due to circumstances beyond one’s control or within one’s control [18]. The 3 key components of self-compassion are proposed to work synergistically to promote kind rather than critical responses to failures and difficult circumstances. Self-kindness (versus self-judgment) involves taking a kind, caring and non-evaluative stance towards perceived inadequacies, shortcomings, and mistakes, and may be particularly valuable for countering the negative self-evaluations that can accompany not being able to meet one’s expectations due to the restrictions of living with a chronic condition [9]. Common humanity (versus isolation) refers to the sense of connection to others that arises from acknowledging the common human experience of imperfection and making mistakes, and being more aware that others may face similar challenging circumstances [18]. Framing hardship from this perspective can help people let go of the “why me?” view of their illness which can compromise adjustment [19], and instead foster a greater connection with others who live with similar conditions. Mindfulness (versus over identification) is the final component of self-compassion as conceptualised by Neff [10], and refers to taking a balanced and non-judgmental view of emotional experiences, grounding them in the present moment and neither ignoring nor becoming overly embroiled in the negative feelings that accompany painful experiences. Neff [10,18] proposes that mindfulness helps counteract the over-identification with one’s suffering that can reduce objectivity and taking a larger perspective on the situation. This mindful stance may be particularly beneficial for dealing with the ongoing pain and suffering of living with a chronic health condition, and encourage healthier ways of viewing the limitations associated with chronic illness. Correlational evidence from a study of healthy students further suggests that certain individual components of self-compassion may be particularly beneficial in the context of health, as the self-kindness and common humanity components were each found to be linked to better physical health and managing life stressors [20].

Although there are other conceptualizations of self-compassion [21], this 3-faceted model is the most widely used in research, in part because of the availability of a measure, the Self-compassion Scale [22], which explicitly assesses each of the facets of self-compassion. The 26-item scale is designed to assess positive and negative dimensions of each facet of self-compassion, but the total score is used more often than the separate subscales [23]. The measure assesses dispositional or trait self-compassion, with an underlying assumption that some individuals can be more or less self-compassionate in the way they regularly respond to challenges or failures. Importantly, self-compassion can also be prompted or fostered as a way of responding to failures and challenges, presenting the possibility that self-compassion can be increased among those who may benefit the most from responding with greater self-kindness and less self-judgement [24–26].

Whether conceived of as a momentary state or as an enduring quality, self-compassion has demonstrated consistent links with an array of indicators of psychological well-being. For example, one meta-analysis found that self-compassion is robustly and negatively linked with psychopathology (average r = –0.54), including depression and anxiety [27], 2 mental health issues that are prevalent in chronic illness populations [28,29]. Several studies have also noted associations of self-compassion with emotional resilience [18,30], and better coping and lower stress [12,13].

Self-Compassion Is Associated with Lower Perceived Stress

Relevant for our focus on chronic illness care, there is some evidence that self-compassion can be effective for improving well-being, and reducing stress in particular, in people with chronic illness. Across two illness samples, cancer and mixed chronic illnesses, those who scored low on a measure of self-compassion had higher levels of depression and stress compared to a healthy control sample [15], suggesting self-compassion may be protective against poor adjustment. Similar results have been found for breast cancer patients, with self-compassion explaining lower distress related to body image [16], and HIV patients, with self-compassion linked to lower stress, anxiety, and shame [31].

The protective role of self-compassion for stress appears to be explained primarily by the set of coping strategies that self-compassionate people use to deal with challenging circumstances. In their review, Allen and Leary [13] noted that self-compassionate people use coping styles that are adaptive and problem-focused (e.g., planning, social-support-seeking, and positive reframing), and tend to not use maladaptive coping styles (e.g., cognitively or behaviorally disengaging from the stressor and other escape-avoidance coping). Consistent with appraisal-based models of coping [32], adaptive coping strategies focus on removing the stressful event, garnering resources to better deal with the stressor, or recasting the stressor as less threatening, and therefore are instrumental in reducing the levels of stress that might normally be perceived in the absence of such coping approaches. Having access to a repertoire of adaptive coping strategies is particularly important in the context of chronic illness which can present a variety of daily challenges related to pain, functional and psychosocial limitations that require a flexible approach to changing demands.

Self-compassion with its links to adaptive coping may be particularly relevant for coping with such demands. One study put this assertion to the test by examining the role of coping strategies in explaining the link between self-compassion and stress in two chronic illness samples, inflammatory bowel disease (IBD) and arthritis [17]. In both samples, higher trait self-compassion was associated with a set of adaptive coping strategies which in turn explained greater coping efficacy and lower perceived stress, with the overall model explaining 43% of the variance in stress after controlling for health status and disease duration. Key adaptive coping strategies included greater use of active coping (a problem-focused coping strategy aimed at removing or reducing the stressor), positive reframing, and acceptance. The self-compassion–stress link was also explained in part by less use of maladaptive strategies, including denial, behavioral disengagement, and self-blame coping [17]. The latter coping strategy in particular is linked to poor adjustment in chronic illness as it reflects efforts to take control over uncontrollable symptoms by viewing illness-related changes, such as flare-ups, as a personal failure to manage one’s illness [9,33]. Together these findings, which were remarkably consistent across 2 distinct chronic illness groups, provide solid evidence to suggest that self-compassion provides individuals living with a chronic illness with a coping advantage that fosters adjustment through engaging in appropriate cognitive and behavioral coping strategies to minimize perceived stress.

Self-Compassion Can Reduce Physiological Stress

A caveat regarding the research to date on self-compassion and stress in chronic illness is that all studies are cross-sectional, which limits any conclusions about the direction of causality. Ignoring the fact that self-compassion in each of these studies was assessed as a relatively stable trait-like quality, one could argue that individuals who are less stressed have a greater opportunity to express kindness to themselves as they are not pre-occupied with illness-related demands and challenges. However, emerging research on self-compassion and the physiological correlates of stress provide a compelling case for the directionality assumed in the cross-sectional research. In one study, healthy young adults were subjected to a standard stress-inducing laboratory task (involving mental mathematics and public speaking), with plasma concentrations of the pro-inflammatory cytokine, interleukin-6 (IL-6), assessed before and after the task on 2 days [34]. Those with higher trait self-compassion responded to the stress task with significantly lower IL-6 levels even after controlling for other potential confounds such as demographics, self-esteem, depressive symptoms, and distress. Self-compassion was also linked to lower baseline levels of IL-6 on both days. These findings suggest that self-compassion may be both an enduring and response-specific protective factor against stress-induced inflammation.

There is also evidence supporting the efficacy of self-compassion interventions for reducing stress. In a study of healthy young women, those who underwent a brief training in self-compassion were found to have lower sympathetic nervous system reactivity (salivary alpha-amylase), and more adaptive parasympathetic nervous system reactivity (heart rate variability) in response to a stress-inducing lab task, compared to placebo control and no-training control groups [35]. That this study was conducted with women only is notable, as research indicates that women tend to have lower levels of self-compassion compared to men [18]. Together with the study on trait self-compassion and biomarkers of stress-induced inflammation, this research provides supportive evidence for the role of self-compassion in reducing the harmful physiological effects of stress. Self-compassion may therefore be particularly beneficial for both psychological and physical well-being in chronic illness given the known and negative impact of stress on symptoms for a number of chronic illnesses such as diabetes [36], cardiovascular disease [32], arthritis [4], and IBD [38].

Self-Compassion and the Regulation of Health Behaviors

Another key role for self-compassion in chronic illness care is through the facilitation of health-promoting behaviors. Health maintenance and disease management behaviors, such as getting diagnostic tests, taking medication, and weight management, are central for managing symptoms and minimizing the risk of disease progression or complications. For example, staying physically fit, maintaining a healthy diet, managing stress, and getting adequate sleep are critical for weight management and the behavioral control of symptoms for a number of chronic diseases [39,40]. Nonetheless, weight management behaviors often require initiating significant lifestyle changes which need to be maintained in order to be effective. Such behaviors can be particularly challenging for individuals with chronic illness symptoms such as pain and fatigue, which can present significant barriers [41] and trigger self-critical coping about not being able to adequately self-care or manage one’s disease [8,9]. Rather than being motivating, theory and evidence indicate that negative evaluations tend to increase stress and promote procrastination of important health behaviors [7,42].

In addition to theory noting why self-compassion may facilitate the regulation of important health behaviors [43,44], there is now a burgeoning body of research supporting the beneficial role of self-compassion in health behaviors [12,43,45]. Each of the 3 components of self-compassion (self-kindness, common humanity, and mindfulness) are posited to facilitate adaptive self-regulatory responses to the inevitable and momentary failures that occur when people try to enact their health goals. For example, not following through with dietary recommendations and giving into temptation can result in feelings of shame, negative self-evaluations, and reactive eating [46], which in turn can result in discontinuation of one’s diet. These minor failures would be viewed less negatively by people who are self-compassionate, because they realise that others have made similar mistakes (common humanity) and, therefore, do not become excessively self-critical (self-kindness) or immersed in feelings of guilt, shame or frustration (mindfulness), negative emotions which are known to interfere with self-regulation [43,47]. Indeed, self-compassion is associated with having fewer negative reactions in response to imagining a scenario in which a diet goal is transgressed [48].

There is also evidence that collectively, these components of self-compassion facilitate experiencing a healthy balance of positive and negative emotions in the context of health behavior change. Self-compassion appears to temper the negative responses to minor setbacks and failures that occur whilst trying to reach health goals, and foster the positive emotions required to maintain motivation during the pursuit of health goals. The most compelling support for this proposition comes from a meta-analysis of 15 samples (n = 3252) in which self-compassion was consistently and positively (average r = 0.25) associated with the practice of a range of health-promoting behaviors relevant for chronic illness care, including healthy eating, regular exercise, healthy sleep behaviors, and stress management [12]. The explanatory roles of positive and negative affect were also tested, with the results indicating that higher levels of positive affect and lower levels of negative affect were significant mediators of the link between self-compassion and health behaviors.

With respect to mood regulation, it is important to note that self-compassion is not simply an optimistic bias that predisposes individuals towards responding only in a positive way to perceived failures or setbacks. Rather, self-compassion fosters taking a balanced perspective on one’s failures, recognizing both the positive and negative aspects, and harnessing the negative mood that arises from a state of discrepancy to motivate self-improvement. For example, in experimental studies, both enduring and momentary self-compassionate states are associated with increased self-improvement motivation and behavior after experiencing failure and regret [49,50], in part because self-compassion fosters personal acceptance [50]. This adaptive responding can translate into better adherence and health behaviors in chronic health conditions after lapses in self-care which might otherwise foster self-criticism and poor disease management. Preliminary evidence from the author’s lab supports this proposition, as self-compassion was positively associated with both treatment adherence and the practice of wellness behaviors, due in part to lower levels of perceived stress, in samples of cancer patients and survivors [51], and people with chronic fatigue syndrome [52].

Clinical Applications of Self-Compassion for Chronic Illness Care

Given the growing evidence linking self-compassion to well-being and health behaviors, the next logical step is to consider ways of cultivating self-compassion for those individuals experiencing chronic health conditions.

Training in mindfulness might be one way to foster self-compassion within a health care setting. Mindfulness-Based Cognitive Behavior Therapy (MBCT [53]), and Mindfulness-Based Stress Reduction (MBSR [54]), are both programs that use mindfulness skills to notice distressing thoughts and feelings, hold these experiences in awareness, and cultivate acceptance and self-compassion [53]. MBSR, usually delivered as an 8-week group-based program, has been found to have significant effects on depression, anxiety and psychological distress in people with chronic somatic diseases [55]. However, fostering self-compassion forms only part of MBCT and MBSR. Indeed there are very few therapeutic interventions that specifically and primarily target self-compassion; however, where they are used they show promise.

Compassionate Mind Training (CMT [24]), Compassion-Focused Therapy (CFT [21]), and the Mindful Self-Compassion program [26] are examples of such targeted interventions. These therapeutic models, again usually delivered in group settings, aim to foster a kinder and more accepting attitude towards oneself through the use of formal meditations (such as living kindness meditation; LKM), home practice and informal practices for daily life (such as self-compassionate letter writing), and have been demonstrated to be effective with, for example, community participants [26], people who hear malevolent voices [56], and those with chronic mood difficulties [24].

Additionally, there are a number of brief self-compassion practices that have been evaluated as an intervention in their own right and demonstrate positive effects. LKM aiming to develop a state of unconditional kindness towards both oneself and others and compassion meditation (CM [57]), are the most commonly described. CM involves techniques to cultivate compassion, or deep, genuine sympathy for those stricken by misfortune, including oneself, “together with an earnest wish to ease this suffering” [58]. The effects of these kindness-based meditations on health and well-being have been summarized in a recent review [59] which illustrates that, whilst limited data exists currently, promising effects have been shown for a number of different groups. Positive effects have for example been demonstrated for patients with chronic back pain [60] and for people with experiences traditionally conceptualized as psychosis [61], suggesting these practice may also be beneficial for other chronic health conditions.

Alongside the potential benefits, how interventions cultivating self-compassion can be delivered in clinical practice is worthy of consideration. Previous applications have included group work (including MBCT, MBSR), one-to-one therapy (such as CFT) and self-directed practice via bibliotherapy or online materials. The different options available here suggest this kind of intervention is highly accessible, potentially inexpensive and could be used as a complimentary approach alongside other more traditional medical disease management treatments or as a stand-alone psychotherapeutic intervention when required.

In order to best support the successful introduction and evaluation of such interventions, consideration of compassionate practice by staff within health-care settings is also needed. Cultivating a culture of compassion through compassionate leadership [62] is required. We know services with higher levels of caring practice have higher quality care, greater well-being for staff and in turn more compassionate care for patients [63] than those services that are struggling. It is hoped that taking a broad systemic compassionate approach (via training, ongoing supervision and ethos cultivation) would ensure that the language used, information communicated, and disease management approaches are planned and delivered in a way that fosters patients’ sense of self-efficacy and kindness towards themselves, with all the benefits outlined above.

Conclusion

Theory and research indicate that self-compassion fosters adaptive responses to perceived failures and setbacks, and is therefore associated with well-being, reduced stress and more frequent health behaviors. The emerging evidence base on the benefits of self-compassion for coping with the challenges of chronic health conditions is promising, and suggests that the benefits of self-compassion noted in non-medical populations may extend to chronic illness care. Interventions cultivating self-compassion may be especially beneficial for those with chronic health conditions through the mechanisms identified earlier; reducing stress (and thereby impacting on an individual’s relationship with their physical health); improving self-management skills with condition related behaviors and health-promoting behaviors; altering one’s relationship with illness-related shame and self-blame; and in boosting resilience. Systematic and rigorous evaluation of such interventions with people with chronic health conditions is now needed, evaluating impacts on well-being, health behaviors, and disease management and outcomes.

Corresponding author: Fuschia M. Sirois, Dept. of Psychology, University of Sheffield, 1 Vicar Lane, Sheffeld, S1 1HD, [email protected].

Fianacial disclosures: None.

SALT LAKE CITY – An aspiring mother calls the sperm bank she has arranged to work with for insemination. “We can ship sperm across state lines,” she is told – until the clinic learns she has a wife and reverses its policy.

This is just one of many experiences faced by lesbian, gay, bisexual, and transgender (LGBT) individuals on the road to parenthood, Sarah R. Holley, PhD, in the psychology department bat San Francisco (Calif.) State University, said at the annual meeting of the American Society of Reproductive Medicine.

Such experiences harm LGBT persons seeking ART and convince them that clinics only care about their money, according to Dr. Holley. So how to do better? “In order to combat heteronormative bias, we first need to get out of problem-solving mode and offer emotional understanding,” she said. For example, providers should never assume that the uteri and eggs of two female partners are interchangeable, or that a woman who is infertile should not grieve, simply because her wife can conceive.

Providers also should be ready to discuss the downsides of tandem pregnancy with lesbian couples, said Angela K. Lawson, PhD, a psychologist at Northwestern University in Chicago. While few studies have examined specific outcomes, “Each woman has a different chance of a successful pregnancy,” she said. “What if one or both women have complications, or a medically challenged child, or they don’t get pregnant at same time?” By taking turns at IVF, couples can better cope with these potential outcomes, she suggested.

Increasingly, lesbian couples are pursuing “reciprocal in vitro fertilization,” in which one woman contributes her ovum for embryo formation, and her partner undergoes implantation. The correct terms here are “genetic mother” and “gestational mother,” not “egg donor” and “gestational carrier,” which have completely different emotional and legal implications, Dr. Lawson emphasized.

That difference makes it imperative for ART clinics to use properly worded consent forms, said Colleen M. Quinn, JD, of the Adoption and Surrogacy Law Center at Locke & Quinn in Richmond, Va. The U.S. Supreme Court decision recognizing same-sex marriage did not clarify legal parental status; birth certificates do not grant legal parental status or rescind the rights of sperm donors, she said. As a result, lesbian couples who separated have won or lost custody battles based on the wording of ART consent forms, she added. Clinics are ethically obligated to advise their LGBT clients to seek legal counsel and create their own agreements about intended parenthood, she emphasized.

For their own protection, clinics also should insist that couples create a legal property disposition agreement between themselves before creating or storing embryos on their behalf, Ms. Quinn said. “An informed consent document is not sufficient,” she added. “Neither is a disposition agreement with the clinic.”

Prospective transgender parents also merit empathic consideration, said Dr. Lawson. Self-identified women who are biologically male may face “profound sadness” because they cannot carry a pregnancy. Conversely, transgender men who become pregnant in order to fulfill dreams of children may nonetheless experience intense gender dysphoria. In at least one case, a transgender male secluded himself at home throughout his pregnancy to avoid public scrutiny, Dr. Lawson said. In all cases, it helps to identify local sources of support and information and refer patients appropriately, Dr. Holley noted.

The experts also briefly covered prospective gay male fathers, who may pay upward of $100,000 to work with a gestational carrier from an agency, they said. Couples who cannot afford to do so may work with a female friend or seek a gestational carrier in another country, each of which raises questions about parental involvement and legal rights. When same-sex male partners are both donating sperm for embryo formation, “One of the biggest controversies is what to do if only one embryo implants,” Dr. Lawson said. “Will the fathers pursue DNA testing of that child? This gets us into issues of intentional unknowing and secrecy, and we know that secrecy can destroy families, whereas privacy typically doesn’t. It’s in the best interest of children to know the story of their parentage.”

None of the experts acknowledged funding sources. Ms. Quinn had no disclosures.

SALT LAKE CITY – An aspiring mother calls the sperm bank she has arranged to work with for insemination. “We can ship sperm across state lines,” she is told – until the clinic learns she has a wife and reverses its policy.

This is just one of many experiences faced by lesbian, gay, bisexual, and transgender (LGBT) individuals on the road to parenthood, Sarah R. Holley, PhD, in the psychology department bat San Francisco (Calif.) State University, said at the annual meeting of the American Society of Reproductive Medicine.

Such experiences harm LGBT persons seeking ART and convince them that clinics only care about their money, according to Dr. Holley. So how to do better? “In order to combat heteronormative bias, we first need to get out of problem-solving mode and offer emotional understanding,” she said. For example, providers should never assume that the uteri and eggs of two female partners are interchangeable, or that a woman who is infertile should not grieve, simply because her wife can conceive.

Providers also should be ready to discuss the downsides of tandem pregnancy with lesbian couples, said Angela K. Lawson, PhD, a psychologist at Northwestern University in Chicago. While few studies have examined specific outcomes, “Each woman has a different chance of a successful pregnancy,” she said. “What if one or both women have complications, or a medically challenged child, or they don’t get pregnant at same time?” By taking turns at IVF, couples can better cope with these potential outcomes, she suggested.

Increasingly, lesbian couples are pursuing “reciprocal in vitro fertilization,” in which one woman contributes her ovum for embryo formation, and her partner undergoes implantation. The correct terms here are “genetic mother” and “gestational mother,” not “egg donor” and “gestational carrier,” which have completely different emotional and legal implications, Dr. Lawson emphasized.

That difference makes it imperative for ART clinics to use properly worded consent forms, said Colleen M. Quinn, JD, of the Adoption and Surrogacy Law Center at Locke & Quinn in Richmond, Va. The U.S. Supreme Court decision recognizing same-sex marriage did not clarify legal parental status; birth certificates do not grant legal parental status or rescind the rights of sperm donors, she said. As a result, lesbian couples who separated have won or lost custody battles based on the wording of ART consent forms, she added. Clinics are ethically obligated to advise their LGBT clients to seek legal counsel and create their own agreements about intended parenthood, she emphasized.

For their own protection, clinics also should insist that couples create a legal property disposition agreement between themselves before creating or storing embryos on their behalf, Ms. Quinn said. “An informed consent document is not sufficient,” she added. “Neither is a disposition agreement with the clinic.”

Prospective transgender parents also merit empathic consideration, said Dr. Lawson. Self-identified women who are biologically male may face “profound sadness” because they cannot carry a pregnancy. Conversely, transgender men who become pregnant in order to fulfill dreams of children may nonetheless experience intense gender dysphoria. In at least one case, a transgender male secluded himself at home throughout his pregnancy to avoid public scrutiny, Dr. Lawson said. In all cases, it helps to identify local sources of support and information and refer patients appropriately, Dr. Holley noted.

The experts also briefly covered prospective gay male fathers, who may pay upward of $100,000 to work with a gestational carrier from an agency, they said. Couples who cannot afford to do so may work with a female friend or seek a gestational carrier in another country, each of which raises questions about parental involvement and legal rights. When same-sex male partners are both donating sperm for embryo formation, “One of the biggest controversies is what to do if only one embryo implants,” Dr. Lawson said. “Will the fathers pursue DNA testing of that child? This gets us into issues of intentional unknowing and secrecy, and we know that secrecy can destroy families, whereas privacy typically doesn’t. It’s in the best interest of children to know the story of their parentage.”

None of the experts acknowledged funding sources. Ms. Quinn had no disclosures.

SALT LAKE CITY – An aspiring mother calls the sperm bank she has arranged to work with for insemination. “We can ship sperm across state lines,” she is told – until the clinic learns she has a wife and reverses its policy.

This is just one of many experiences faced by lesbian, gay, bisexual, and transgender (LGBT) individuals on the road to parenthood, Sarah R. Holley, PhD, in the psychology department bat San Francisco (Calif.) State University, said at the annual meeting of the American Society of Reproductive Medicine.

Such experiences harm LGBT persons seeking ART and convince them that clinics only care about their money, according to Dr. Holley. So how to do better? “In order to combat heteronormative bias, we first need to get out of problem-solving mode and offer emotional understanding,” she said. For example, providers should never assume that the uteri and eggs of two female partners are interchangeable, or that a woman who is infertile should not grieve, simply because her wife can conceive.

Providers also should be ready to discuss the downsides of tandem pregnancy with lesbian couples, said Angela K. Lawson, PhD, a psychologist at Northwestern University in Chicago. While few studies have examined specific outcomes, “Each woman has a different chance of a successful pregnancy,” she said. “What if one or both women have complications, or a medically challenged child, or they don’t get pregnant at same time?” By taking turns at IVF, couples can better cope with these potential outcomes, she suggested.

Increasingly, lesbian couples are pursuing “reciprocal in vitro fertilization,” in which one woman contributes her ovum for embryo formation, and her partner undergoes implantation. The correct terms here are “genetic mother” and “gestational mother,” not “egg donor” and “gestational carrier,” which have completely different emotional and legal implications, Dr. Lawson emphasized.

That difference makes it imperative for ART clinics to use properly worded consent forms, said Colleen M. Quinn, JD, of the Adoption and Surrogacy Law Center at Locke & Quinn in Richmond, Va. The U.S. Supreme Court decision recognizing same-sex marriage did not clarify legal parental status; birth certificates do not grant legal parental status or rescind the rights of sperm donors, she said. As a result, lesbian couples who separated have won or lost custody battles based on the wording of ART consent forms, she added. Clinics are ethically obligated to advise their LGBT clients to seek legal counsel and create their own agreements about intended parenthood, she emphasized.

For their own protection, clinics also should insist that couples create a legal property disposition agreement between themselves before creating or storing embryos on their behalf, Ms. Quinn said. “An informed consent document is not sufficient,” she added. “Neither is a disposition agreement with the clinic.”

Prospective transgender parents also merit empathic consideration, said Dr. Lawson. Self-identified women who are biologically male may face “profound sadness” because they cannot carry a pregnancy. Conversely, transgender men who become pregnant in order to fulfill dreams of children may nonetheless experience intense gender dysphoria. In at least one case, a transgender male secluded himself at home throughout his pregnancy to avoid public scrutiny, Dr. Lawson said. In all cases, it helps to identify local sources of support and information and refer patients appropriately, Dr. Holley noted.

The experts also briefly covered prospective gay male fathers, who may pay upward of $100,000 to work with a gestational carrier from an agency, they said. Couples who cannot afford to do so may work with a female friend or seek a gestational carrier in another country, each of which raises questions about parental involvement and legal rights. When same-sex male partners are both donating sperm for embryo formation, “One of the biggest controversies is what to do if only one embryo implants,” Dr. Lawson said. “Will the fathers pursue DNA testing of that child? This gets us into issues of intentional unknowing and secrecy, and we know that secrecy can destroy families, whereas privacy typically doesn’t. It’s in the best interest of children to know the story of their parentage.”

None of the experts acknowledged funding sources. Ms. Quinn had no disclosures.

In recognition of Chronic Obstructive Pulmonary Disease (COPD) Month, check out SHM’s free guide and toolkit to improve the care of patients hospitalized for an exacerbation of COPD. The toolkit can also help you make changes to COPD care at both the individual patient and institutional level.

Download the guide or view the toolkit today at www.hospitalmedicine.org/copd.

In recognition of Chronic Obstructive Pulmonary Disease (COPD) Month, check out SHM’s free guide and toolkit to improve the care of patients hospitalized for an exacerbation of COPD. The toolkit can also help you make changes to COPD care at both the individual patient and institutional level.

Download the guide or view the toolkit today at www.hospitalmedicine.org/copd.

In recognition of Chronic Obstructive Pulmonary Disease (COPD) Month, check out SHM’s free guide and toolkit to improve the care of patients hospitalized for an exacerbation of COPD. The toolkit can also help you make changes to COPD care at both the individual patient and institutional level.

Download the guide or view the toolkit today at www.hospitalmedicine.org/copd.

Mitochondria (red) colocalization

with autophagosomes (green),

a process that happens during

mitophagy in cancer cells

treated with FLT3 inhibitor

Image from Besim Ogretmen

and Mohammed Dany/MUSC

Research published in Blood has revealed a mechanism that confers treatment resistance in FLT3-mutated acute myeloid leukemia (AML), as well as a drug that might overcome that resistance.

Researchers found that ceramide-dependent mitophagy plays a key role in drug-mediated AML cell death.

“Ceramide, a pro-cell-death lipid, kills cancer cells by causing them to eat their own mitochondria,” explained study author Besim Ogretmen, PhD, of the Medical University of South Carolina (MUSC) Hollings Cancer Center in Charleston, South Carolina.

AML cells with FLT3-ITD inhibit ceramide synthesis and thereby become resistant to cell death. FLT3 inhibitors have been developed to combat this resistance, but they’ve fallen short of expectations.

“Unfortunately, regardless of the inhibitor, the problem of resistance to FLT3-targeted therapy has persisted,” said study author Mohammed Dany, an MD/PhD student at MUSC.

However, Dany, Dr Ogretmen, and their colleagues were able to overcome this resistance with a synthetic ceramide analogue known as LCL-461.

In vitro, the drug reactivated mitophagy and killed AML cells that were resistant to treatment with the FLT3 inhibitor crenolanib.

In mice with crenolanib-resistant human AML xenografts, LCL-461 eliminated AML cells from the bone marrow.

A positively charged molecule, LCL-461 is attracted to the mitochondria of cancer cells, which become negatively charged through the Warburg effect. The researchers said this limits off-target effects that can occur with less specific inhibitors of FLT3 signaling.

Furthermore, Dr Ogretmen’s lab has tested the safety of LCL-461 in previous studies and reported that it had no major side effects at therapeutically active doses.

Dr Ogretmen and his colleagues’ next step is to perform large animal studies with LCL-461.

“We are very excited about this,” Dr Ogretmen said. “Head and neck cancers also respond to this drug very well. What we are trying to do is really cure cancer one disease at a time, and we are digging and digging to understand the mechanisms of how these cancer cells escape therapeutic interventions so that we can find mechanism-based therapeutics to have more tools for treatment.”

LCL-461 was developed at MUSC. The MUSC Foundation for Research Development has patented the drug and licensed it to Charleston-based startup SphingoGene, Inc.

Mitochondria (red) colocalization

with autophagosomes (green),

a process that happens during

mitophagy in cancer cells

treated with FLT3 inhibitor

Image from Besim Ogretmen

and Mohammed Dany/MUSC

Research published in Blood has revealed a mechanism that confers treatment resistance in FLT3-mutated acute myeloid leukemia (AML), as well as a drug that might overcome that resistance.

Researchers found that ceramide-dependent mitophagy plays a key role in drug-mediated AML cell death.

“Ceramide, a pro-cell-death lipid, kills cancer cells by causing them to eat their own mitochondria,” explained study author Besim Ogretmen, PhD, of the Medical University of South Carolina (MUSC) Hollings Cancer Center in Charleston, South Carolina.

AML cells with FLT3-ITD inhibit ceramide synthesis and thereby become resistant to cell death. FLT3 inhibitors have been developed to combat this resistance, but they’ve fallen short of expectations.

“Unfortunately, regardless of the inhibitor, the problem of resistance to FLT3-targeted therapy has persisted,” said study author Mohammed Dany, an MD/PhD student at MUSC.

However, Dany, Dr Ogretmen, and their colleagues were able to overcome this resistance with a synthetic ceramide analogue known as LCL-461.

In vitro, the drug reactivated mitophagy and killed AML cells that were resistant to treatment with the FLT3 inhibitor crenolanib.

In mice with crenolanib-resistant human AML xenografts, LCL-461 eliminated AML cells from the bone marrow.

A positively charged molecule, LCL-461 is attracted to the mitochondria of cancer cells, which become negatively charged through the Warburg effect. The researchers said this limits off-target effects that can occur with less specific inhibitors of FLT3 signaling.

Furthermore, Dr Ogretmen’s lab has tested the safety of LCL-461 in previous studies and reported that it had no major side effects at therapeutically active doses.

Dr Ogretmen and his colleagues’ next step is to perform large animal studies with LCL-461.

“We are very excited about this,” Dr Ogretmen said. “Head and neck cancers also respond to this drug very well. What we are trying to do is really cure cancer one disease at a time, and we are digging and digging to understand the mechanisms of how these cancer cells escape therapeutic interventions so that we can find mechanism-based therapeutics to have more tools for treatment.”

LCL-461 was developed at MUSC. The MUSC Foundation for Research Development has patented the drug and licensed it to Charleston-based startup SphingoGene, Inc.

Mitochondria (red) colocalization

with autophagosomes (green),

a process that happens during

mitophagy in cancer cells

treated with FLT3 inhibitor

Image from Besim Ogretmen

and Mohammed Dany/MUSC

Research published in Blood has revealed a mechanism that confers treatment resistance in FLT3-mutated acute myeloid leukemia (AML), as well as a drug that might overcome that resistance.

Researchers found that ceramide-dependent mitophagy plays a key role in drug-mediated AML cell death.

“Ceramide, a pro-cell-death lipid, kills cancer cells by causing them to eat their own mitochondria,” explained study author Besim Ogretmen, PhD, of the Medical University of South Carolina (MUSC) Hollings Cancer Center in Charleston, South Carolina.

AML cells with FLT3-ITD inhibit ceramide synthesis and thereby become resistant to cell death. FLT3 inhibitors have been developed to combat this resistance, but they’ve fallen short of expectations.

“Unfortunately, regardless of the inhibitor, the problem of resistance to FLT3-targeted therapy has persisted,” said study author Mohammed Dany, an MD/PhD student at MUSC.

However, Dany, Dr Ogretmen, and their colleagues were able to overcome this resistance with a synthetic ceramide analogue known as LCL-461.

In vitro, the drug reactivated mitophagy and killed AML cells that were resistant to treatment with the FLT3 inhibitor crenolanib.

In mice with crenolanib-resistant human AML xenografts, LCL-461 eliminated AML cells from the bone marrow.

A positively charged molecule, LCL-461 is attracted to the mitochondria of cancer cells, which become negatively charged through the Warburg effect. The researchers said this limits off-target effects that can occur with less specific inhibitors of FLT3 signaling.

Furthermore, Dr Ogretmen’s lab has tested the safety of LCL-461 in previous studies and reported that it had no major side effects at therapeutically active doses.

Dr Ogretmen and his colleagues’ next step is to perform large animal studies with LCL-461.

“We are very excited about this,” Dr Ogretmen said. “Head and neck cancers also respond to this drug very well. What we are trying to do is really cure cancer one disease at a time, and we are digging and digging to understand the mechanisms of how these cancer cells escape therapeutic interventions so that we can find mechanism-based therapeutics to have more tools for treatment.”

LCL-461 was developed at MUSC. The MUSC Foundation for Research Development has patented the drug and licensed it to Charleston-based startup SphingoGene, Inc.

BOSTON – Biosimilar versions of disease-modifying antirheumatic drugs have arrived in the United States, but even the best, most efficacious drugs are worthless if patients don’t want to take them.

“The science is important, the medicine is important, but at the end of the day, acceptance and use is what’s going to measure success,” said Seth D. Ginsberg, at a biosimilars symposium sponsored by Corrona, a business that provides registry data and consulting services to biopharmaceutical companies.

Ingram/thinkstock

Biosimilar confidence

His group has launched “Operation: Biosimilar Confidence” which is designed to educate patients and physicians about the clinical value and scientific underpinnings of biosimilars, as well as the thorough development, review, and regulatory processes involved.

The goal of the project is to instill confidence in patients by helping them to understand the manufacturer’s safety track record, reliability of the biosimilar supply chain, and the availability to them of support services, if they make the switch to a biosimilar.

“Generics don’t have equivalent patient-support programs, and the projection is theoretically that [biosimilar] manufacturers won’t either. We will not accept that. We are going to do everything we can for those patients, to advocate for the continuation of the support programs that we rely on as patients,” he said.

Patient concerns

Surveys of patient concerns about biosimilars have highlighted four key areas:

• What is the manufacturer’s overall safety record in both biologic agents and small-molecule therapies?
• Supply-chain logistic – Will the manufacturer commit to consistent production and supply?
• Will biosimilar manufacturers provide patient support at levels equal to those offered by innovator biologic makers, and what kind of support will be available – phone, websites, social media, copays, etc.?
• Payer ethics – Will payers offer lower copays, deductibles, or premiums, and are payers as concerned as patients about product safety, supply chain, and support?

The implementation strategy for the campaign will focus on speaking directly to patients through CreakyJoints.org, partner Global Healthy Living Foundation, patient and physician organizations, social and conventional media, advertising, and one-on-one encounters.

“We have to talk directly and indirectly to employers and employee-advocacy groups. We have to let these big self-insured employers understand what the perspective of the patient is and what life is like thanks to these medicine, and why biosimilars are a critical component to the success of living with these conditions,” he said.

Advocates also have to work with the media to create “a surround-sound message that reaches all audiences with additional frequency.”

“We cannot allow Wall Street Journal business analysts to dictate the conversations about biosimilars. Why? They’re looking at one thing, and only one thing, and they’re ignoring the patient perspective,” Ginsberg said.

Lastly, patient groups need to work closely with payers, physician groups, and manufacturers to ensure that biosimilars can be smoothly integrated into the healthcare system, he emphasized.

“I want to be crystal clear here: We can’t wait for biosimilars. Bring it on! We want them,” he said.

BOSTON – Biosimilar versions of disease-modifying antirheumatic drugs have arrived in the United States, but even the best, most efficacious drugs are worthless if patients don’t want to take them.

“The science is important, the medicine is important, but at the end of the day, acceptance and use is what’s going to measure success,” said Seth D. Ginsberg, at a biosimilars symposium sponsored by Corrona, a business that provides registry data and consulting services to biopharmaceutical companies.

Ingram/thinkstock

Biosimilar confidence

His group has launched “Operation: Biosimilar Confidence” which is designed to educate patients and physicians about the clinical value and scientific underpinnings of biosimilars, as well as the thorough development, review, and regulatory processes involved.

The goal of the project is to instill confidence in patients by helping them to understand the manufacturer’s safety track record, reliability of the biosimilar supply chain, and the availability to them of support services, if they make the switch to a biosimilar.

“Generics don’t have equivalent patient-support programs, and the projection is theoretically that [biosimilar] manufacturers won’t either. We will not accept that. We are going to do everything we can for those patients, to advocate for the continuation of the support programs that we rely on as patients,” he said.

Patient concerns

Surveys of patient concerns about biosimilars have highlighted four key areas:

• What is the manufacturer’s overall safety record in both biologic agents and small-molecule therapies?
• Supply-chain logistic – Will the manufacturer commit to consistent production and supply?
• Will biosimilar manufacturers provide patient support at levels equal to those offered by innovator biologic makers, and what kind of support will be available – phone, websites, social media, copays, etc.?
• Payer ethics – Will payers offer lower copays, deductibles, or premiums, and are payers as concerned as patients about product safety, supply chain, and support?

The implementation strategy for the campaign will focus on speaking directly to patients through CreakyJoints.org, partner Global Healthy Living Foundation, patient and physician organizations, social and conventional media, advertising, and one-on-one encounters.

“We have to talk directly and indirectly to employers and employee-advocacy groups. We have to let these big self-insured employers understand what the perspective of the patient is and what life is like thanks to these medicine, and why biosimilars are a critical component to the success of living with these conditions,” he said.

Advocates also have to work with the media to create “a surround-sound message that reaches all audiences with additional frequency.”

“We cannot allow Wall Street Journal business analysts to dictate the conversations about biosimilars. Why? They’re looking at one thing, and only one thing, and they’re ignoring the patient perspective,” Ginsberg said.

Lastly, patient groups need to work closely with payers, physician groups, and manufacturers to ensure that biosimilars can be smoothly integrated into the healthcare system, he emphasized.

“I want to be crystal clear here: We can’t wait for biosimilars. Bring it on! We want them,” he said.

BOSTON – Biosimilar versions of disease-modifying antirheumatic drugs have arrived in the United States, but even the best, most efficacious drugs are worthless if patients don’t want to take them.

“The science is important, the medicine is important, but at the end of the day, acceptance and use is what’s going to measure success,” said Seth D. Ginsberg, at a biosimilars symposium sponsored by Corrona, a business that provides registry data and consulting services to biopharmaceutical companies.

Ingram/thinkstock

Biosimilar confidence

His group has launched “Operation: Biosimilar Confidence” which is designed to educate patients and physicians about the clinical value and scientific underpinnings of biosimilars, as well as the thorough development, review, and regulatory processes involved.

The goal of the project is to instill confidence in patients by helping them to understand the manufacturer’s safety track record, reliability of the biosimilar supply chain, and the availability to them of support services, if they make the switch to a biosimilar.

“Generics don’t have equivalent patient-support programs, and the projection is theoretically that [biosimilar] manufacturers won’t either. We will not accept that. We are going to do everything we can for those patients, to advocate for the continuation of the support programs that we rely on as patients,” he said.

Patient concerns

Surveys of patient concerns about biosimilars have highlighted four key areas:

• What is the manufacturer’s overall safety record in both biologic agents and small-molecule therapies?
• Supply-chain logistic – Will the manufacturer commit to consistent production and supply?
• Will biosimilar manufacturers provide patient support at levels equal to those offered by innovator biologic makers, and what kind of support will be available – phone, websites, social media, copays, etc.?
• Payer ethics – Will payers offer lower copays, deductibles, or premiums, and are payers as concerned as patients about product safety, supply chain, and support?

The implementation strategy for the campaign will focus on speaking directly to patients through CreakyJoints.org, partner Global Healthy Living Foundation, patient and physician organizations, social and conventional media, advertising, and one-on-one encounters.

“We have to talk directly and indirectly to employers and employee-advocacy groups. We have to let these big self-insured employers understand what the perspective of the patient is and what life is like thanks to these medicine, and why biosimilars are a critical component to the success of living with these conditions,” he said.

Advocates also have to work with the media to create “a surround-sound message that reaches all audiences with additional frequency.”

“We cannot allow Wall Street Journal business analysts to dictate the conversations about biosimilars. Why? They’re looking at one thing, and only one thing, and they’re ignoring the patient perspective,” Ginsberg said.

Lastly, patient groups need to work closely with payers, physician groups, and manufacturers to ensure that biosimilars can be smoothly integrated into the healthcare system, he emphasized.

“I want to be crystal clear here: We can’t wait for biosimilars. Bring it on! We want them,” he said.

The Centers for Disease Control and Prevention have reported the first cases of the multidrug-resistant fungal infection Candida auris in the United States, with evidence suggesting transmission may have occurred within U.S. health care facilities.

The report, published in the Nov. 4 edition of Morbidity and Mortality Weekly Report, described seven cases of patients infected with C. auris, which was isolated from blood in five cases, urine in one, and the ear in one. All the patients with bloodstream infections had central venous catheters at the time of diagnosis, and four of these patients died in the weeks and months after diagnosis of the infection.

The Centers for Disease Control and Prevention have reported the first cases of the multidrug-resistant fungal infection Candida auris in the United States, with evidence suggesting transmission may have occurred within U.S. health care facilities.

The report, published in the Nov. 4 edition of Morbidity and Mortality Weekly Report, described seven cases of patients infected with C. auris, which was isolated from blood in five cases, urine in one, and the ear in one. All the patients with bloodstream infections had central venous catheters at the time of diagnosis, and four of these patients died in the weeks and months after diagnosis of the infection.

The Centers for Disease Control and Prevention have reported the first cases of the multidrug-resistant fungal infection Candida auris in the United States, with evidence suggesting transmission may have occurred within U.S. health care facilities.

The report, published in the Nov. 4 edition of Morbidity and Mortality Weekly Report, described seven cases of patients infected with C. auris, which was isolated from blood in five cases, urine in one, and the ear in one. All the patients with bloodstream infections had central venous catheters at the time of diagnosis, and four of these patients died in the weeks and months after diagnosis of the infection.