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Health-Related Quality of Life in Skin Cancer Patients
As the most common form of cancer in the United States,1 dermatologists often focus on treating the physical aspects of skin cancer, but it is equally important to consider the consequences that this disease has on a patient’s quality of life (QOL). Health is a dynamic process, encompassing one’s physical, emotional, and psychosocial well-being. There are a number of ways to measure health outcomes including mortality, morbidity, health status, and QOL. In recent years, health-related QOL (HRQOL) outcomes in dermatology have become increasingly important to clinical practice and may become factors in quality measurement or reimbursement.
Understanding a patient’s HRQOL allows health care providers to better evaluate the burden of disease and disability associated with skin cancer and its treatment. Clinical severity is not always able to capture the extent to which a disease affects one’s life.2 Furthermore, physician estimation of disease severity is not always consistent with patient-reported outcomes.3 As such, clinical questionnaires may be invaluable tools capable of objectively reporting a patient’s perception of improvement in health, which may affect how a dermatologist approaches treatment, discussion, and maintenance.
Nonmelanoma Skin Cancer
Most nonmelanoma skin cancer (NMSC) occurs in readily visible areas, namely the head and neck. Surgical treatment minimizes recurrence and complication rates. Nonmelanoma skin cancer has a low mortality and a high cure rate if diagnosed early; therefore, it may be difficult to assess treatment efficacy on cure rates alone. The amalgamation of anxiety associated with the diagnosis, aesthetic and functional concerns regarding treatment, and long-term consequences including fear of future skin cancer may have a lasting effect on an individual’s psychosocial relationships and underscores the need for QOL studies.
Most generic QOL and dermatology-specific QOL instruments fail to accurately detect the concerns of patients with NMSC.4-6 Generic QOL measures used for skin cancer patients report scores of patients that were similar to population norms,4 suggesting that these tools may fail to appropriately assess unique QOL concerns among individuals with skin cancer. Furthermore, dermatology-specific instruments have been reported to be insensitive to specific appearance-related concerns of patients with NMSC, likely because skin cancer patients made up a small percentage of the initial population in their design.4,7 Nevertheless, dermatology-specific instruments may be suitable depending on the objectives of the study.8
Recently, skin cancer–specific QOL instruments have been developed to fill the paucity of appropriate tools for this population. These questionnaires include the Facial Skin Cancer Index, Skin Cancer Index, and the Skin Cancer Quality of Life Impact Tool.7 The Skin Cancer Index is a 15-item questionnaire validated in patients undergoing Mohs micrographic surgery and has been used to assess behavior modification and risk perceptions in NMSC patients. Importantly, it does ask the patient if he/she is worried about scarring. The Facial Skin Cancer Index and the Skin Cancer Quality of Life Impact Tool do not take into account detailed aesthetic concerns regarding facial disfigurement and scarring or expectations of reconstruction.7 It may be prudent to assess these areas with supplemental scales.
Melanoma
Melanoma, the third most common skin cancer, is highly aggressive and can affect young and middle-aged patients. Because the mortality associated with later-stage melanoma is greater, the QOL impact of melanoma differs from NMSC. There are also 3 distinct periods of melanoma HRQOL impact: diagnosis, treatment, and follow-up. Approximately 30% of patients diagnosed with melanoma report high levels of psychological distress.9 The psychosocial effects of a melanoma diagnosis are longitudinal, as there is a high survival rate in early disease but also an increased future risk for melanoma, affecting future behaviors and overall QOL. The diagnosis of melanoma also affects family members due to the increased risk among first-degree relatives. After removal of deeper melanoma, the patient remains at risk for disease progression, which can have a profound impact on his/her social and professional activities and overall lifestyle. There may be a role for longitudinal QOL assessments to monitor changes over time and direct ongoing therapy.
The proportion of patients with melanoma who report high levels of impairment in QOL is comparable to that seen in other malignancies.10 Generic QOL instruments have found that melanoma patients have medium to high levels of distress and substantial improvement in HRQOL has been achieved with cognitive-behavioral intervention.11 Quality-of-life studies also have shown levels of distress are highest at initial diagnosis and immediately following treatment.12 In a randomized surgical trial, patients with a larger excision margin had poorer mental and physical function scores on assessment.13 Skin-specific QOL instruments have been used in studies of patients with melanoma and found that postmelanoma surveillance did not impact QOL. Also, women experienced greater improvements in QOL over time after reporting lower scores immediately postsurgery.13
The FACT-melanoma (Functional Assessment of Cancer Therapy) is a melanoma-specific HRQOL assessment that has been used in patients undergoing clinical trials. It has been shown to distinguish between early and advanced-stage (stages III or IV) HRQOL issues.14 Patients with early-stage melanoma are more concerned with cosmetic outcome, and those with later-stage melanoma are more concerned with morbidity and mortality associated with treatment.
Comment
Choosing the best QOL instrument depends on the specific objectives of the study. Although generic QOL questionnaires have performed poorly in studies of specific skin diseases and even dermatology-specific tools have shown limited responsiveness in skin cancer, a combination of tools may be an effective approach. However, dermatologists must be cautious when administering these valuable tools to ensure that they do not become a burdensome task for the patient.15 Although no single skin cancer–specific QOL tool is perfect, it is likely that the current questionnaires still allow for aid with appropriate patient management and comparison of treatments.16
It behooves clinicians to recognize and appreciate the value of QOL instruments as an important adjunct to treatment. These tools have shown QOL to be an independent predictor of survival among many types of cancer patients, including melanoma.10 Currently, the psychological and emotional needs of skin cancer patients often go overlooked and undetected by conventional methods. Within one’s own practice, introducing QOL assessments can improve patient self-awareness and physician awareness of matters that may have a greater impact on patient health. On a larger scale, introducing patient-reported outcome measures can affect resource allocation by identifying patient populations that may be most impacted and can give a comprehensive method for physicians to gauge treatment efficacy, leading to improved outcomes.
1. Robinson JK. Sun exposure, sun protection, and vitamin D. JAMA. 2005;294:1541-1543.
2. Motley RJ, Finlay AY. Practical use of a disability index in the routine management of acne. Clin Exp Dermatol. 1992;17:1-3.
3. Chren MM, Lasek RJ, Quinn LM, et al. Skindex, a quality-of-life measure for patients with skin disease: reliability, validity, and responsiveness. J Invest Dermatol. 1996;107:707-713.
4. Gibbons EC, Comabella CI, Fitzpatrick R. A structured review of patient-reported outcome measures for patients with skin cancer, 2013. Br J Dermatol. 2013;168:1176-1186.
5. Burdon-Jones D, Thomas P, Baker R. Quality of life issues in nonmetastatic skin cancer. Br J Dermatol. 2010;162:147-151.
6. Lear W, Akeroyd JD, Mittmann N, et al. Measurement of utility in nonmelanoma skin cancer. J Cutan Med Surg. 2008;12:102-106.
7. Bates AS, Davis CR, Takwale A, et al. Patient-reported outcome measures in nonmelanoma skin cancer of the face: a systematic review. Br J Dermatol. 2013;168:1187-1194.
8. Lee EH, Klassen AF, Nehal KS, et al. A systematic review of patient-reported outcome instruments of nonmelanoma skin cancer in the dermatologic population. J Am Acad Dermatol. 2013;69:e59-e67.
9. Kasparian NA. Psychological stress and melanoma: are we meeting our patients’ psychological needs? Clin Dermatol. 2013;31:41-46.
10. Cormier JN, Cromwell KD, Ross MI. Health-related quality of life in patients with melanoma: overview of instruments and outcomes. Dermatol Clin. 2012;30:245-254.
11. Trask PC, Paterson AG, Griffith KA, et al. Cognitive-behavioral intervention for distress in patients with melanoma: comparison with standard medical care and impact on quality of life. Cancer. 2003;98:854-864.
12. Boyle DA. Psychological adjustment to the melanoma experience. Semin Oncol Nurs. 2003;191:70-77.
13. Newton-Bishop JA, Nolan C, Turner F, et al. A quality-of-life study in high-risk (thickness > = or 2 mm) cutaneous melanoma patients in a randomized trial of 1-cm versus 3-cm surgical excision margins. J Investig Dermatol Symp Proc. 2004;9:152-159.
14. Winstanley JB, Saw R, Boyle F, et al. The FACT-Melanoma quality-of-life instrument: comparison of a five-point and four-point response scale using the Rasch measurement model. Melanoma Res. 2013;23:61-69.
15. Swartz RJ, Baum GP, Askew RL, et al. Reducing patient burden to the FACT-Melanoma quality-of-life questionnaire. Melanoma Res. 2012;22:158-163.
16. Black N. Patient-reported outcome measures in skin cancer. Br J Dermatol. 2013;168:1151.
As the most common form of cancer in the United States,1 dermatologists often focus on treating the physical aspects of skin cancer, but it is equally important to consider the consequences that this disease has on a patient’s quality of life (QOL). Health is a dynamic process, encompassing one’s physical, emotional, and psychosocial well-being. There are a number of ways to measure health outcomes including mortality, morbidity, health status, and QOL. In recent years, health-related QOL (HRQOL) outcomes in dermatology have become increasingly important to clinical practice and may become factors in quality measurement or reimbursement.
Understanding a patient’s HRQOL allows health care providers to better evaluate the burden of disease and disability associated with skin cancer and its treatment. Clinical severity is not always able to capture the extent to which a disease affects one’s life.2 Furthermore, physician estimation of disease severity is not always consistent with patient-reported outcomes.3 As such, clinical questionnaires may be invaluable tools capable of objectively reporting a patient’s perception of improvement in health, which may affect how a dermatologist approaches treatment, discussion, and maintenance.
Nonmelanoma Skin Cancer
Most nonmelanoma skin cancer (NMSC) occurs in readily visible areas, namely the head and neck. Surgical treatment minimizes recurrence and complication rates. Nonmelanoma skin cancer has a low mortality and a high cure rate if diagnosed early; therefore, it may be difficult to assess treatment efficacy on cure rates alone. The amalgamation of anxiety associated with the diagnosis, aesthetic and functional concerns regarding treatment, and long-term consequences including fear of future skin cancer may have a lasting effect on an individual’s psychosocial relationships and underscores the need for QOL studies.
Most generic QOL and dermatology-specific QOL instruments fail to accurately detect the concerns of patients with NMSC.4-6 Generic QOL measures used for skin cancer patients report scores of patients that were similar to population norms,4 suggesting that these tools may fail to appropriately assess unique QOL concerns among individuals with skin cancer. Furthermore, dermatology-specific instruments have been reported to be insensitive to specific appearance-related concerns of patients with NMSC, likely because skin cancer patients made up a small percentage of the initial population in their design.4,7 Nevertheless, dermatology-specific instruments may be suitable depending on the objectives of the study.8
Recently, skin cancer–specific QOL instruments have been developed to fill the paucity of appropriate tools for this population. These questionnaires include the Facial Skin Cancer Index, Skin Cancer Index, and the Skin Cancer Quality of Life Impact Tool.7 The Skin Cancer Index is a 15-item questionnaire validated in patients undergoing Mohs micrographic surgery and has been used to assess behavior modification and risk perceptions in NMSC patients. Importantly, it does ask the patient if he/she is worried about scarring. The Facial Skin Cancer Index and the Skin Cancer Quality of Life Impact Tool do not take into account detailed aesthetic concerns regarding facial disfigurement and scarring or expectations of reconstruction.7 It may be prudent to assess these areas with supplemental scales.
Melanoma
Melanoma, the third most common skin cancer, is highly aggressive and can affect young and middle-aged patients. Because the mortality associated with later-stage melanoma is greater, the QOL impact of melanoma differs from NMSC. There are also 3 distinct periods of melanoma HRQOL impact: diagnosis, treatment, and follow-up. Approximately 30% of patients diagnosed with melanoma report high levels of psychological distress.9 The psychosocial effects of a melanoma diagnosis are longitudinal, as there is a high survival rate in early disease but also an increased future risk for melanoma, affecting future behaviors and overall QOL. The diagnosis of melanoma also affects family members due to the increased risk among first-degree relatives. After removal of deeper melanoma, the patient remains at risk for disease progression, which can have a profound impact on his/her social and professional activities and overall lifestyle. There may be a role for longitudinal QOL assessments to monitor changes over time and direct ongoing therapy.
The proportion of patients with melanoma who report high levels of impairment in QOL is comparable to that seen in other malignancies.10 Generic QOL instruments have found that melanoma patients have medium to high levels of distress and substantial improvement in HRQOL has been achieved with cognitive-behavioral intervention.11 Quality-of-life studies also have shown levels of distress are highest at initial diagnosis and immediately following treatment.12 In a randomized surgical trial, patients with a larger excision margin had poorer mental and physical function scores on assessment.13 Skin-specific QOL instruments have been used in studies of patients with melanoma and found that postmelanoma surveillance did not impact QOL. Also, women experienced greater improvements in QOL over time after reporting lower scores immediately postsurgery.13
The FACT-melanoma (Functional Assessment of Cancer Therapy) is a melanoma-specific HRQOL assessment that has been used in patients undergoing clinical trials. It has been shown to distinguish between early and advanced-stage (stages III or IV) HRQOL issues.14 Patients with early-stage melanoma are more concerned with cosmetic outcome, and those with later-stage melanoma are more concerned with morbidity and mortality associated with treatment.
Comment
Choosing the best QOL instrument depends on the specific objectives of the study. Although generic QOL questionnaires have performed poorly in studies of specific skin diseases and even dermatology-specific tools have shown limited responsiveness in skin cancer, a combination of tools may be an effective approach. However, dermatologists must be cautious when administering these valuable tools to ensure that they do not become a burdensome task for the patient.15 Although no single skin cancer–specific QOL tool is perfect, it is likely that the current questionnaires still allow for aid with appropriate patient management and comparison of treatments.16
It behooves clinicians to recognize and appreciate the value of QOL instruments as an important adjunct to treatment. These tools have shown QOL to be an independent predictor of survival among many types of cancer patients, including melanoma.10 Currently, the psychological and emotional needs of skin cancer patients often go overlooked and undetected by conventional methods. Within one’s own practice, introducing QOL assessments can improve patient self-awareness and physician awareness of matters that may have a greater impact on patient health. On a larger scale, introducing patient-reported outcome measures can affect resource allocation by identifying patient populations that may be most impacted and can give a comprehensive method for physicians to gauge treatment efficacy, leading to improved outcomes.
As the most common form of cancer in the United States,1 dermatologists often focus on treating the physical aspects of skin cancer, but it is equally important to consider the consequences that this disease has on a patient’s quality of life (QOL). Health is a dynamic process, encompassing one’s physical, emotional, and psychosocial well-being. There are a number of ways to measure health outcomes including mortality, morbidity, health status, and QOL. In recent years, health-related QOL (HRQOL) outcomes in dermatology have become increasingly important to clinical practice and may become factors in quality measurement or reimbursement.
Understanding a patient’s HRQOL allows health care providers to better evaluate the burden of disease and disability associated with skin cancer and its treatment. Clinical severity is not always able to capture the extent to which a disease affects one’s life.2 Furthermore, physician estimation of disease severity is not always consistent with patient-reported outcomes.3 As such, clinical questionnaires may be invaluable tools capable of objectively reporting a patient’s perception of improvement in health, which may affect how a dermatologist approaches treatment, discussion, and maintenance.
Nonmelanoma Skin Cancer
Most nonmelanoma skin cancer (NMSC) occurs in readily visible areas, namely the head and neck. Surgical treatment minimizes recurrence and complication rates. Nonmelanoma skin cancer has a low mortality and a high cure rate if diagnosed early; therefore, it may be difficult to assess treatment efficacy on cure rates alone. The amalgamation of anxiety associated with the diagnosis, aesthetic and functional concerns regarding treatment, and long-term consequences including fear of future skin cancer may have a lasting effect on an individual’s psychosocial relationships and underscores the need for QOL studies.
Most generic QOL and dermatology-specific QOL instruments fail to accurately detect the concerns of patients with NMSC.4-6 Generic QOL measures used for skin cancer patients report scores of patients that were similar to population norms,4 suggesting that these tools may fail to appropriately assess unique QOL concerns among individuals with skin cancer. Furthermore, dermatology-specific instruments have been reported to be insensitive to specific appearance-related concerns of patients with NMSC, likely because skin cancer patients made up a small percentage of the initial population in their design.4,7 Nevertheless, dermatology-specific instruments may be suitable depending on the objectives of the study.8
Recently, skin cancer–specific QOL instruments have been developed to fill the paucity of appropriate tools for this population. These questionnaires include the Facial Skin Cancer Index, Skin Cancer Index, and the Skin Cancer Quality of Life Impact Tool.7 The Skin Cancer Index is a 15-item questionnaire validated in patients undergoing Mohs micrographic surgery and has been used to assess behavior modification and risk perceptions in NMSC patients. Importantly, it does ask the patient if he/she is worried about scarring. The Facial Skin Cancer Index and the Skin Cancer Quality of Life Impact Tool do not take into account detailed aesthetic concerns regarding facial disfigurement and scarring or expectations of reconstruction.7 It may be prudent to assess these areas with supplemental scales.
Melanoma
Melanoma, the third most common skin cancer, is highly aggressive and can affect young and middle-aged patients. Because the mortality associated with later-stage melanoma is greater, the QOL impact of melanoma differs from NMSC. There are also 3 distinct periods of melanoma HRQOL impact: diagnosis, treatment, and follow-up. Approximately 30% of patients diagnosed with melanoma report high levels of psychological distress.9 The psychosocial effects of a melanoma diagnosis are longitudinal, as there is a high survival rate in early disease but also an increased future risk for melanoma, affecting future behaviors and overall QOL. The diagnosis of melanoma also affects family members due to the increased risk among first-degree relatives. After removal of deeper melanoma, the patient remains at risk for disease progression, which can have a profound impact on his/her social and professional activities and overall lifestyle. There may be a role for longitudinal QOL assessments to monitor changes over time and direct ongoing therapy.
The proportion of patients with melanoma who report high levels of impairment in QOL is comparable to that seen in other malignancies.10 Generic QOL instruments have found that melanoma patients have medium to high levels of distress and substantial improvement in HRQOL has been achieved with cognitive-behavioral intervention.11 Quality-of-life studies also have shown levels of distress are highest at initial diagnosis and immediately following treatment.12 In a randomized surgical trial, patients with a larger excision margin had poorer mental and physical function scores on assessment.13 Skin-specific QOL instruments have been used in studies of patients with melanoma and found that postmelanoma surveillance did not impact QOL. Also, women experienced greater improvements in QOL over time after reporting lower scores immediately postsurgery.13
The FACT-melanoma (Functional Assessment of Cancer Therapy) is a melanoma-specific HRQOL assessment that has been used in patients undergoing clinical trials. It has been shown to distinguish between early and advanced-stage (stages III or IV) HRQOL issues.14 Patients with early-stage melanoma are more concerned with cosmetic outcome, and those with later-stage melanoma are more concerned with morbidity and mortality associated with treatment.
Comment
Choosing the best QOL instrument depends on the specific objectives of the study. Although generic QOL questionnaires have performed poorly in studies of specific skin diseases and even dermatology-specific tools have shown limited responsiveness in skin cancer, a combination of tools may be an effective approach. However, dermatologists must be cautious when administering these valuable tools to ensure that they do not become a burdensome task for the patient.15 Although no single skin cancer–specific QOL tool is perfect, it is likely that the current questionnaires still allow for aid with appropriate patient management and comparison of treatments.16
It behooves clinicians to recognize and appreciate the value of QOL instruments as an important adjunct to treatment. These tools have shown QOL to be an independent predictor of survival among many types of cancer patients, including melanoma.10 Currently, the psychological and emotional needs of skin cancer patients often go overlooked and undetected by conventional methods. Within one’s own practice, introducing QOL assessments can improve patient self-awareness and physician awareness of matters that may have a greater impact on patient health. On a larger scale, introducing patient-reported outcome measures can affect resource allocation by identifying patient populations that may be most impacted and can give a comprehensive method for physicians to gauge treatment efficacy, leading to improved outcomes.
1. Robinson JK. Sun exposure, sun protection, and vitamin D. JAMA. 2005;294:1541-1543.
2. Motley RJ, Finlay AY. Practical use of a disability index in the routine management of acne. Clin Exp Dermatol. 1992;17:1-3.
3. Chren MM, Lasek RJ, Quinn LM, et al. Skindex, a quality-of-life measure for patients with skin disease: reliability, validity, and responsiveness. J Invest Dermatol. 1996;107:707-713.
4. Gibbons EC, Comabella CI, Fitzpatrick R. A structured review of patient-reported outcome measures for patients with skin cancer, 2013. Br J Dermatol. 2013;168:1176-1186.
5. Burdon-Jones D, Thomas P, Baker R. Quality of life issues in nonmetastatic skin cancer. Br J Dermatol. 2010;162:147-151.
6. Lear W, Akeroyd JD, Mittmann N, et al. Measurement of utility in nonmelanoma skin cancer. J Cutan Med Surg. 2008;12:102-106.
7. Bates AS, Davis CR, Takwale A, et al. Patient-reported outcome measures in nonmelanoma skin cancer of the face: a systematic review. Br J Dermatol. 2013;168:1187-1194.
8. Lee EH, Klassen AF, Nehal KS, et al. A systematic review of patient-reported outcome instruments of nonmelanoma skin cancer in the dermatologic population. J Am Acad Dermatol. 2013;69:e59-e67.
9. Kasparian NA. Psychological stress and melanoma: are we meeting our patients’ psychological needs? Clin Dermatol. 2013;31:41-46.
10. Cormier JN, Cromwell KD, Ross MI. Health-related quality of life in patients with melanoma: overview of instruments and outcomes. Dermatol Clin. 2012;30:245-254.
11. Trask PC, Paterson AG, Griffith KA, et al. Cognitive-behavioral intervention for distress in patients with melanoma: comparison with standard medical care and impact on quality of life. Cancer. 2003;98:854-864.
12. Boyle DA. Psychological adjustment to the melanoma experience. Semin Oncol Nurs. 2003;191:70-77.
13. Newton-Bishop JA, Nolan C, Turner F, et al. A quality-of-life study in high-risk (thickness > = or 2 mm) cutaneous melanoma patients in a randomized trial of 1-cm versus 3-cm surgical excision margins. J Investig Dermatol Symp Proc. 2004;9:152-159.
14. Winstanley JB, Saw R, Boyle F, et al. The FACT-Melanoma quality-of-life instrument: comparison of a five-point and four-point response scale using the Rasch measurement model. Melanoma Res. 2013;23:61-69.
15. Swartz RJ, Baum GP, Askew RL, et al. Reducing patient burden to the FACT-Melanoma quality-of-life questionnaire. Melanoma Res. 2012;22:158-163.
16. Black N. Patient-reported outcome measures in skin cancer. Br J Dermatol. 2013;168:1151.
1. Robinson JK. Sun exposure, sun protection, and vitamin D. JAMA. 2005;294:1541-1543.
2. Motley RJ, Finlay AY. Practical use of a disability index in the routine management of acne. Clin Exp Dermatol. 1992;17:1-3.
3. Chren MM, Lasek RJ, Quinn LM, et al. Skindex, a quality-of-life measure for patients with skin disease: reliability, validity, and responsiveness. J Invest Dermatol. 1996;107:707-713.
4. Gibbons EC, Comabella CI, Fitzpatrick R. A structured review of patient-reported outcome measures for patients with skin cancer, 2013. Br J Dermatol. 2013;168:1176-1186.
5. Burdon-Jones D, Thomas P, Baker R. Quality of life issues in nonmetastatic skin cancer. Br J Dermatol. 2010;162:147-151.
6. Lear W, Akeroyd JD, Mittmann N, et al. Measurement of utility in nonmelanoma skin cancer. J Cutan Med Surg. 2008;12:102-106.
7. Bates AS, Davis CR, Takwale A, et al. Patient-reported outcome measures in nonmelanoma skin cancer of the face: a systematic review. Br J Dermatol. 2013;168:1187-1194.
8. Lee EH, Klassen AF, Nehal KS, et al. A systematic review of patient-reported outcome instruments of nonmelanoma skin cancer in the dermatologic population. J Am Acad Dermatol. 2013;69:e59-e67.
9. Kasparian NA. Psychological stress and melanoma: are we meeting our patients’ psychological needs? Clin Dermatol. 2013;31:41-46.
10. Cormier JN, Cromwell KD, Ross MI. Health-related quality of life in patients with melanoma: overview of instruments and outcomes. Dermatol Clin. 2012;30:245-254.
11. Trask PC, Paterson AG, Griffith KA, et al. Cognitive-behavioral intervention for distress in patients with melanoma: comparison with standard medical care and impact on quality of life. Cancer. 2003;98:854-864.
12. Boyle DA. Psychological adjustment to the melanoma experience. Semin Oncol Nurs. 2003;191:70-77.
13. Newton-Bishop JA, Nolan C, Turner F, et al. A quality-of-life study in high-risk (thickness > = or 2 mm) cutaneous melanoma patients in a randomized trial of 1-cm versus 3-cm surgical excision margins. J Investig Dermatol Symp Proc. 2004;9:152-159.
14. Winstanley JB, Saw R, Boyle F, et al. The FACT-Melanoma quality-of-life instrument: comparison of a five-point and four-point response scale using the Rasch measurement model. Melanoma Res. 2013;23:61-69.
15. Swartz RJ, Baum GP, Askew RL, et al. Reducing patient burden to the FACT-Melanoma quality-of-life questionnaire. Melanoma Res. 2012;22:158-163.
16. Black N. Patient-reported outcome measures in skin cancer. Br J Dermatol. 2013;168:1151.
The reasons why I don’t take your insurance
I take most, but not all insurances. I suspect the majority of doctors today would say the same.
I see a lot of articles about how patients who now have insurance can’t find doctors to see them. And, of course, generally this is blamed on doctors.
The problem is that people often equate insurance with health care, and they aren’t the same. If your insurance reimbursement is minimal, the odds are that no one in health care will be contracted with it. There may be a few newbie docs who figure they can make up the loss by sheer volume. As a result, they get badly overwhelmed, with long waiting-room times and a few months’ delay for appointments. As soon as they get established, they will drop the insurance. This creates a revolving door of doctors for some plans, as new docs use them to get started, then run away screaming and burned out at the first chance they get.
People often get upset and use the “You don’t care, you’re only in this for the money!” line when they find out I don’t take their insurance. My staff hears it frequently.
On the contrary, I do care. If I didn’t, I’d likely get out of medicine entirely. The fact that I’m still doing this after 16 years says that much.
But, in order to take care of people, I also have to pay my rent, staff, insurance, and all the other amounts that make up an overhead. If I can’t keep my office open, then I’m not able to help anyone.
This gets tricky, as some insurances will pay less than the amount needed for me to stay in practice. Some will argue that it’s better than nothing, but, if you’re not making enough to meet overhead, then nothing and less than the amount needed for me to stay in practice mean pretty much the same thing.
If I don’t take your insurance, I’m sorry. This has nothing to do with you. It means that company has decided not to pay me enough to cover my expenses (their decision, not mine), and so I had to drop them in order to continue helping others.
Like all other doctors, I’m forced to decide what works best for both me and the highest number of my patients. To continue caring for people, I need to stay open, and I select the insurances that will allow me to do that. I can’t be everyone’s doctor.
So please, don’t be angry if I no longer take your insurance. In a perfect world, overhead and business decisions wouldn’t play such a key role in medicine. But our world is far from perfect and always will be.
Dr. Block has a solo neurology practice in Scottsdale, Ariz.
I take most, but not all insurances. I suspect the majority of doctors today would say the same.
I see a lot of articles about how patients who now have insurance can’t find doctors to see them. And, of course, generally this is blamed on doctors.
The problem is that people often equate insurance with health care, and they aren’t the same. If your insurance reimbursement is minimal, the odds are that no one in health care will be contracted with it. There may be a few newbie docs who figure they can make up the loss by sheer volume. As a result, they get badly overwhelmed, with long waiting-room times and a few months’ delay for appointments. As soon as they get established, they will drop the insurance. This creates a revolving door of doctors for some plans, as new docs use them to get started, then run away screaming and burned out at the first chance they get.
People often get upset and use the “You don’t care, you’re only in this for the money!” line when they find out I don’t take their insurance. My staff hears it frequently.
On the contrary, I do care. If I didn’t, I’d likely get out of medicine entirely. The fact that I’m still doing this after 16 years says that much.
But, in order to take care of people, I also have to pay my rent, staff, insurance, and all the other amounts that make up an overhead. If I can’t keep my office open, then I’m not able to help anyone.
This gets tricky, as some insurances will pay less than the amount needed for me to stay in practice. Some will argue that it’s better than nothing, but, if you’re not making enough to meet overhead, then nothing and less than the amount needed for me to stay in practice mean pretty much the same thing.
If I don’t take your insurance, I’m sorry. This has nothing to do with you. It means that company has decided not to pay me enough to cover my expenses (their decision, not mine), and so I had to drop them in order to continue helping others.
Like all other doctors, I’m forced to decide what works best for both me and the highest number of my patients. To continue caring for people, I need to stay open, and I select the insurances that will allow me to do that. I can’t be everyone’s doctor.
So please, don’t be angry if I no longer take your insurance. In a perfect world, overhead and business decisions wouldn’t play such a key role in medicine. But our world is far from perfect and always will be.
Dr. Block has a solo neurology practice in Scottsdale, Ariz.
I take most, but not all insurances. I suspect the majority of doctors today would say the same.
I see a lot of articles about how patients who now have insurance can’t find doctors to see them. And, of course, generally this is blamed on doctors.
The problem is that people often equate insurance with health care, and they aren’t the same. If your insurance reimbursement is minimal, the odds are that no one in health care will be contracted with it. There may be a few newbie docs who figure they can make up the loss by sheer volume. As a result, they get badly overwhelmed, with long waiting-room times and a few months’ delay for appointments. As soon as they get established, they will drop the insurance. This creates a revolving door of doctors for some plans, as new docs use them to get started, then run away screaming and burned out at the first chance they get.
People often get upset and use the “You don’t care, you’re only in this for the money!” line when they find out I don’t take their insurance. My staff hears it frequently.
On the contrary, I do care. If I didn’t, I’d likely get out of medicine entirely. The fact that I’m still doing this after 16 years says that much.
But, in order to take care of people, I also have to pay my rent, staff, insurance, and all the other amounts that make up an overhead. If I can’t keep my office open, then I’m not able to help anyone.
This gets tricky, as some insurances will pay less than the amount needed for me to stay in practice. Some will argue that it’s better than nothing, but, if you’re not making enough to meet overhead, then nothing and less than the amount needed for me to stay in practice mean pretty much the same thing.
If I don’t take your insurance, I’m sorry. This has nothing to do with you. It means that company has decided not to pay me enough to cover my expenses (their decision, not mine), and so I had to drop them in order to continue helping others.
Like all other doctors, I’m forced to decide what works best for both me and the highest number of my patients. To continue caring for people, I need to stay open, and I select the insurances that will allow me to do that. I can’t be everyone’s doctor.
So please, don’t be angry if I no longer take your insurance. In a perfect world, overhead and business decisions wouldn’t play such a key role in medicine. But our world is far from perfect and always will be.
Dr. Block has a solo neurology practice in Scottsdale, Ariz.
What are the heightened risks of pregnancy in women older than age 45?
Endometrial cancer
Most practicing gynecologists will diagnose a patient with endometrial cancer at some point during their careers. While referral to a gynecologic oncologist is indicated for treatment of all endometrial cancers, patients will likely have questions for their gynecologists prior to referral. The backbone of prognosis and treatment depends on the type of endometrial cancer (type 1 or type 2) and the stage of the cancer. The basics of endometrial cancer treatment will be reviewed in this article.
Endometrial cancer can be classified into two distinct subgroups based on histology and clinical behavior. Type 1 tumors are the most common type of endometrial cancer, accounting for nearly 80% of endometrial cancers. These tumors have an endometrioid histology and are well-differentiated, gland-forming tumors. The endometrioid tumors are graded by evaluating the gland formation and/or architecture, with grade 1 tumors having less than 5% solid growth and grade 2 tumors having 6%-50% solid growth. They also are graded based on the degree of nuclear atypia (Gynecol. Oncol. 1983;15:10-17).
Type 1 tumors are estrogen driven and less aggressive than their type 2 counterparts. They tend to be more common in overweight or obese patients, patients with longstanding anovulation or polycystic ovarian syndrome (PCOS), or patients placed on unopposed estrogen. Molecularly, type 1 tumors often exhibit mutations in phosphatase and tensin homolog (PTEN), Kras, and beta-catenin. Microsatellite instability with mutations in MSH2, MSH6, MLH1, and PMS2 also has been observed in 20% of sporadic endometrial cancers, as well as women with Lynch syndrome (also known as hereditary nonpolyposis colorectal cancer syndrome) (J. Clin. Oncol. 2006;24:4783-91).
Type 1 tumors are starkly different from type 2 tumors. While type 2 tumors account for 10%-20% of endometrial cancers, they are responsible for the majority of recurrences and deaths. They include serous, clear cell, mucinous, squamous, transitional cell, carcinosarcomas and undifferentiated tumors. More recently, it has been suggested that grade 3 endometrioid carcinomas be grouped with type 2 tumors. The genetic mutations and clinical behavior of grade 3 endometrioid tumors are more consistent with type 2 tumors. Type 2 tumors are more likely to show mutations in p53, aneuploidy, and overexpression of HER2/neu (Gynecol. Oncol. 2008;108:3-9). Type 2 tumors are more likely to present with advanced stage.
While it is important to understand these two categories of endometrial cancers as two distinct clinical entities with markedly different prognosis and outcomes, there is some histologic crossover. Some endometrioid tumors will have a component of serous or clear cell within the tumor. Investigators have found that up to a 10% serous component within an endometrioid tumor can confer a worse prognosis and likely warrants more aggressive treatment (Cancer 2004;101:2214-21).
Given the relatively indolent clinical course of type 1 tumors, preoperative imaging to evaluate for metastatic disease is not indicated without concerning symptoms. Additionally, often women diagnosed with type 1 tumors are able to be fully treated with hysterectomy, and in circumstances of early-stage disease, most patients with these tumors do not need adjuvant treatment with chemotherapy or radiation. Alternatively, type 2 tumors are more aggressive and may warrant additional imaging prior to hysterectomy to evaluate for distant metastasis, as uterine features may not be indicative of metastatic disease. These women will need additional treatment with radiation and likely chemotherapy following comprehensive surgical staging and hysterectomy, given the aggressive nature of their tumors.
Dividing endometrial cancers into these two distinct groups allows providers to appropriately counsel and treat patients. Having an understanding of this distinction can help practicing gynecologists who will most likely make the diagnosis of endometrial cancer within their practice. Any patient with abnormal bleeding or postmenopausal bleeding should be promptly evaluated to facilitate an early diagnosis. Regardless of whether a patient has a type 1 or type 2 tumor, early-stage diagnosis will improve the patient’s prognosis and survival.
Dr. Clark is a chief resident in the department of obstetrics and gynecology at the University of North Carolina at Chapel Hill. Dr. Gehrig is professor and director of gynecologic oncology at the university. Dr. Clark and Dr. Gehrig had no conflicts of interest to disclose.
Most practicing gynecologists will diagnose a patient with endometrial cancer at some point during their careers. While referral to a gynecologic oncologist is indicated for treatment of all endometrial cancers, patients will likely have questions for their gynecologists prior to referral. The backbone of prognosis and treatment depends on the type of endometrial cancer (type 1 or type 2) and the stage of the cancer. The basics of endometrial cancer treatment will be reviewed in this article.
Endometrial cancer can be classified into two distinct subgroups based on histology and clinical behavior. Type 1 tumors are the most common type of endometrial cancer, accounting for nearly 80% of endometrial cancers. These tumors have an endometrioid histology and are well-differentiated, gland-forming tumors. The endometrioid tumors are graded by evaluating the gland formation and/or architecture, with grade 1 tumors having less than 5% solid growth and grade 2 tumors having 6%-50% solid growth. They also are graded based on the degree of nuclear atypia (Gynecol. Oncol. 1983;15:10-17).
Type 1 tumors are estrogen driven and less aggressive than their type 2 counterparts. They tend to be more common in overweight or obese patients, patients with longstanding anovulation or polycystic ovarian syndrome (PCOS), or patients placed on unopposed estrogen. Molecularly, type 1 tumors often exhibit mutations in phosphatase and tensin homolog (PTEN), Kras, and beta-catenin. Microsatellite instability with mutations in MSH2, MSH6, MLH1, and PMS2 also has been observed in 20% of sporadic endometrial cancers, as well as women with Lynch syndrome (also known as hereditary nonpolyposis colorectal cancer syndrome) (J. Clin. Oncol. 2006;24:4783-91).
Type 1 tumors are starkly different from type 2 tumors. While type 2 tumors account for 10%-20% of endometrial cancers, they are responsible for the majority of recurrences and deaths. They include serous, clear cell, mucinous, squamous, transitional cell, carcinosarcomas and undifferentiated tumors. More recently, it has been suggested that grade 3 endometrioid carcinomas be grouped with type 2 tumors. The genetic mutations and clinical behavior of grade 3 endometrioid tumors are more consistent with type 2 tumors. Type 2 tumors are more likely to show mutations in p53, aneuploidy, and overexpression of HER2/neu (Gynecol. Oncol. 2008;108:3-9). Type 2 tumors are more likely to present with advanced stage.
While it is important to understand these two categories of endometrial cancers as two distinct clinical entities with markedly different prognosis and outcomes, there is some histologic crossover. Some endometrioid tumors will have a component of serous or clear cell within the tumor. Investigators have found that up to a 10% serous component within an endometrioid tumor can confer a worse prognosis and likely warrants more aggressive treatment (Cancer 2004;101:2214-21).
Given the relatively indolent clinical course of type 1 tumors, preoperative imaging to evaluate for metastatic disease is not indicated without concerning symptoms. Additionally, often women diagnosed with type 1 tumors are able to be fully treated with hysterectomy, and in circumstances of early-stage disease, most patients with these tumors do not need adjuvant treatment with chemotherapy or radiation. Alternatively, type 2 tumors are more aggressive and may warrant additional imaging prior to hysterectomy to evaluate for distant metastasis, as uterine features may not be indicative of metastatic disease. These women will need additional treatment with radiation and likely chemotherapy following comprehensive surgical staging and hysterectomy, given the aggressive nature of their tumors.
Dividing endometrial cancers into these two distinct groups allows providers to appropriately counsel and treat patients. Having an understanding of this distinction can help practicing gynecologists who will most likely make the diagnosis of endometrial cancer within their practice. Any patient with abnormal bleeding or postmenopausal bleeding should be promptly evaluated to facilitate an early diagnosis. Regardless of whether a patient has a type 1 or type 2 tumor, early-stage diagnosis will improve the patient’s prognosis and survival.
Dr. Clark is a chief resident in the department of obstetrics and gynecology at the University of North Carolina at Chapel Hill. Dr. Gehrig is professor and director of gynecologic oncology at the university. Dr. Clark and Dr. Gehrig had no conflicts of interest to disclose.
Most practicing gynecologists will diagnose a patient with endometrial cancer at some point during their careers. While referral to a gynecologic oncologist is indicated for treatment of all endometrial cancers, patients will likely have questions for their gynecologists prior to referral. The backbone of prognosis and treatment depends on the type of endometrial cancer (type 1 or type 2) and the stage of the cancer. The basics of endometrial cancer treatment will be reviewed in this article.
Endometrial cancer can be classified into two distinct subgroups based on histology and clinical behavior. Type 1 tumors are the most common type of endometrial cancer, accounting for nearly 80% of endometrial cancers. These tumors have an endometrioid histology and are well-differentiated, gland-forming tumors. The endometrioid tumors are graded by evaluating the gland formation and/or architecture, with grade 1 tumors having less than 5% solid growth and grade 2 tumors having 6%-50% solid growth. They also are graded based on the degree of nuclear atypia (Gynecol. Oncol. 1983;15:10-17).
Type 1 tumors are estrogen driven and less aggressive than their type 2 counterparts. They tend to be more common in overweight or obese patients, patients with longstanding anovulation or polycystic ovarian syndrome (PCOS), or patients placed on unopposed estrogen. Molecularly, type 1 tumors often exhibit mutations in phosphatase and tensin homolog (PTEN), Kras, and beta-catenin. Microsatellite instability with mutations in MSH2, MSH6, MLH1, and PMS2 also has been observed in 20% of sporadic endometrial cancers, as well as women with Lynch syndrome (also known as hereditary nonpolyposis colorectal cancer syndrome) (J. Clin. Oncol. 2006;24:4783-91).
Type 1 tumors are starkly different from type 2 tumors. While type 2 tumors account for 10%-20% of endometrial cancers, they are responsible for the majority of recurrences and deaths. They include serous, clear cell, mucinous, squamous, transitional cell, carcinosarcomas and undifferentiated tumors. More recently, it has been suggested that grade 3 endometrioid carcinomas be grouped with type 2 tumors. The genetic mutations and clinical behavior of grade 3 endometrioid tumors are more consistent with type 2 tumors. Type 2 tumors are more likely to show mutations in p53, aneuploidy, and overexpression of HER2/neu (Gynecol. Oncol. 2008;108:3-9). Type 2 tumors are more likely to present with advanced stage.
While it is important to understand these two categories of endometrial cancers as two distinct clinical entities with markedly different prognosis and outcomes, there is some histologic crossover. Some endometrioid tumors will have a component of serous or clear cell within the tumor. Investigators have found that up to a 10% serous component within an endometrioid tumor can confer a worse prognosis and likely warrants more aggressive treatment (Cancer 2004;101:2214-21).
Given the relatively indolent clinical course of type 1 tumors, preoperative imaging to evaluate for metastatic disease is not indicated without concerning symptoms. Additionally, often women diagnosed with type 1 tumors are able to be fully treated with hysterectomy, and in circumstances of early-stage disease, most patients with these tumors do not need adjuvant treatment with chemotherapy or radiation. Alternatively, type 2 tumors are more aggressive and may warrant additional imaging prior to hysterectomy to evaluate for distant metastasis, as uterine features may not be indicative of metastatic disease. These women will need additional treatment with radiation and likely chemotherapy following comprehensive surgical staging and hysterectomy, given the aggressive nature of their tumors.
Dividing endometrial cancers into these two distinct groups allows providers to appropriately counsel and treat patients. Having an understanding of this distinction can help practicing gynecologists who will most likely make the diagnosis of endometrial cancer within their practice. Any patient with abnormal bleeding or postmenopausal bleeding should be promptly evaluated to facilitate an early diagnosis. Regardless of whether a patient has a type 1 or type 2 tumor, early-stage diagnosis will improve the patient’s prognosis and survival.
Dr. Clark is a chief resident in the department of obstetrics and gynecology at the University of North Carolina at Chapel Hill. Dr. Gehrig is professor and director of gynecologic oncology at the university. Dr. Clark and Dr. Gehrig had no conflicts of interest to disclose.
The battle between science and fear
If Maine conjures up images of pine-covered mountains and rocky coastlines, then Fort Kent won’t fit into your construct. Slumbering on the broad flat valley of the Saint John River that forms Maine’s border with Canada, the rolling farmland around this town of 4,000 would remind you more of Iowa. Aroostook County is potato country and is so unique that most Mainers refer to it simply as “The County.”
Fort Kent was originally built as a defense outpost but was seldom used. Today it is an unlikely spot for what could be one of the pivotal battles in a war that could decide our country’s future. But who in 1800 would have guessed that the small town of Gettysburg would have such a crucial role to play in American history.
And, who would imagine that a pixy-faced young woman with strawberry ringlets would be one of the heroes? But, on Halloween Day, 2014, the chief judge of the Maine District Courts ruled that Kaci Hickox was no longer to be quarantined in her home. As a nurse who had recently returned from West Africa where she had been caring for patients with Ebola, she certainly was at a higher risk for contracting the disease. But, there has been no clinical evidence that she had the disease or was contagious.
However, the governor of New Jersey, Chris Christie, ignored the facts and responded to irrational fear and isolated Ms. Hickox when she arrived from Africa in an unheated tent with little regard for her psychological comfort. With the help of her lawyer, she was allowed to travel back to Fort Kent where she had been living with her boyfriend, a nursing student. The governor of Maine, Paul LePage, reacted only slightly less irrationally than his New Jersey counterpart, and Kaci was ordered not leave her home. Negotiations for a more reasonable evidence-based arrangement broke down. And, in a brave and clever show of defiance, Kaci and her boyfriend went for a bike ride, heading away from town on the rural roads around Fort Kent. Were the state troopers following in two squad cars going to don hazmat suits to arrest the couple? Not likely, and the ride ended uneventfully. The next day Judge Charles C. Laverdiere lifted the quarantine and in his decision said that we all owed the nurse “a debt of gratitude” for her decision to treat Ebola patients.
Much of the buzz surrounding this decision has focused on the issue of Ms. Hickox’s personal freedom and even the constitutionality of her quarantine. But, more importantly, her case represents a rare victory in a key battle in a bigger war, the war between science and fear-based irrational thought. It is a war in which we have incurred too many losses. Hundreds of children have died of illnesses from which they could have been protected by immunization because their parents failed to trust the science.
Scientific thought is on the defensive. It is being poorly taught in school, and sadly a few who claim to be scientists have allowed their egos and greed to taint the results of their experiments. In the vacuum created when science has been ignored, fear and emotionally based decisions dominate.
In the case of Ebola, we all have suffered from the absence of a single voice of authority armed with evidence. It could have been the U.S. Surgeon General if the Senate hadn’t declined to confirm President Barack Obama’s appointment because of his position on gun-related issues.
However, even if we had a surgeon general, the most obvious choice for the role of defender and promoter of evidence-based decisions in a case that is so highly charged should have been the president himself. The country deserved a straight talking, look-em-in-the-eye delineation of the facts, a presentation that acknowledged that there are seldom situations in which the risk is zero, but one that reminded us that the only thing we have to fear is fear itself. However, this president’s style seems to be to step back and delegate when we need someone who will step forward and lead. The result of his abdication has been the confusing and conflicting attempts at leadership by three governors who may have been well intended, but lacked the skills and resources to address the scientific evidence.
In a battle with no general and a commander-in-chief who chose to stay in his tent, science has been rescued temporarily by a courageous young nurse and sage judge from Maine where our state motto is “Dirigo” – I lead.
Dr. Wilkoff practiced primary care pediatrics in Brunswick, Maine, for nearly 40 years. He has authored several books on behavioral pediatrics, including “How to Say No to Your Toddler.” E-mail him at [email protected].
If Maine conjures up images of pine-covered mountains and rocky coastlines, then Fort Kent won’t fit into your construct. Slumbering on the broad flat valley of the Saint John River that forms Maine’s border with Canada, the rolling farmland around this town of 4,000 would remind you more of Iowa. Aroostook County is potato country and is so unique that most Mainers refer to it simply as “The County.”
Fort Kent was originally built as a defense outpost but was seldom used. Today it is an unlikely spot for what could be one of the pivotal battles in a war that could decide our country’s future. But who in 1800 would have guessed that the small town of Gettysburg would have such a crucial role to play in American history.
And, who would imagine that a pixy-faced young woman with strawberry ringlets would be one of the heroes? But, on Halloween Day, 2014, the chief judge of the Maine District Courts ruled that Kaci Hickox was no longer to be quarantined in her home. As a nurse who had recently returned from West Africa where she had been caring for patients with Ebola, she certainly was at a higher risk for contracting the disease. But, there has been no clinical evidence that she had the disease or was contagious.
However, the governor of New Jersey, Chris Christie, ignored the facts and responded to irrational fear and isolated Ms. Hickox when she arrived from Africa in an unheated tent with little regard for her psychological comfort. With the help of her lawyer, she was allowed to travel back to Fort Kent where she had been living with her boyfriend, a nursing student. The governor of Maine, Paul LePage, reacted only slightly less irrationally than his New Jersey counterpart, and Kaci was ordered not leave her home. Negotiations for a more reasonable evidence-based arrangement broke down. And, in a brave and clever show of defiance, Kaci and her boyfriend went for a bike ride, heading away from town on the rural roads around Fort Kent. Were the state troopers following in two squad cars going to don hazmat suits to arrest the couple? Not likely, and the ride ended uneventfully. The next day Judge Charles C. Laverdiere lifted the quarantine and in his decision said that we all owed the nurse “a debt of gratitude” for her decision to treat Ebola patients.
Much of the buzz surrounding this decision has focused on the issue of Ms. Hickox’s personal freedom and even the constitutionality of her quarantine. But, more importantly, her case represents a rare victory in a key battle in a bigger war, the war between science and fear-based irrational thought. It is a war in which we have incurred too many losses. Hundreds of children have died of illnesses from which they could have been protected by immunization because their parents failed to trust the science.
Scientific thought is on the defensive. It is being poorly taught in school, and sadly a few who claim to be scientists have allowed their egos and greed to taint the results of their experiments. In the vacuum created when science has been ignored, fear and emotionally based decisions dominate.
In the case of Ebola, we all have suffered from the absence of a single voice of authority armed with evidence. It could have been the U.S. Surgeon General if the Senate hadn’t declined to confirm President Barack Obama’s appointment because of his position on gun-related issues.
However, even if we had a surgeon general, the most obvious choice for the role of defender and promoter of evidence-based decisions in a case that is so highly charged should have been the president himself. The country deserved a straight talking, look-em-in-the-eye delineation of the facts, a presentation that acknowledged that there are seldom situations in which the risk is zero, but one that reminded us that the only thing we have to fear is fear itself. However, this president’s style seems to be to step back and delegate when we need someone who will step forward and lead. The result of his abdication has been the confusing and conflicting attempts at leadership by three governors who may have been well intended, but lacked the skills and resources to address the scientific evidence.
In a battle with no general and a commander-in-chief who chose to stay in his tent, science has been rescued temporarily by a courageous young nurse and sage judge from Maine where our state motto is “Dirigo” – I lead.
Dr. Wilkoff practiced primary care pediatrics in Brunswick, Maine, for nearly 40 years. He has authored several books on behavioral pediatrics, including “How to Say No to Your Toddler.” E-mail him at [email protected].
If Maine conjures up images of pine-covered mountains and rocky coastlines, then Fort Kent won’t fit into your construct. Slumbering on the broad flat valley of the Saint John River that forms Maine’s border with Canada, the rolling farmland around this town of 4,000 would remind you more of Iowa. Aroostook County is potato country and is so unique that most Mainers refer to it simply as “The County.”
Fort Kent was originally built as a defense outpost but was seldom used. Today it is an unlikely spot for what could be one of the pivotal battles in a war that could decide our country’s future. But who in 1800 would have guessed that the small town of Gettysburg would have such a crucial role to play in American history.
And, who would imagine that a pixy-faced young woman with strawberry ringlets would be one of the heroes? But, on Halloween Day, 2014, the chief judge of the Maine District Courts ruled that Kaci Hickox was no longer to be quarantined in her home. As a nurse who had recently returned from West Africa where she had been caring for patients with Ebola, she certainly was at a higher risk for contracting the disease. But, there has been no clinical evidence that she had the disease or was contagious.
However, the governor of New Jersey, Chris Christie, ignored the facts and responded to irrational fear and isolated Ms. Hickox when she arrived from Africa in an unheated tent with little regard for her psychological comfort. With the help of her lawyer, she was allowed to travel back to Fort Kent where she had been living with her boyfriend, a nursing student. The governor of Maine, Paul LePage, reacted only slightly less irrationally than his New Jersey counterpart, and Kaci was ordered not leave her home. Negotiations for a more reasonable evidence-based arrangement broke down. And, in a brave and clever show of defiance, Kaci and her boyfriend went for a bike ride, heading away from town on the rural roads around Fort Kent. Were the state troopers following in two squad cars going to don hazmat suits to arrest the couple? Not likely, and the ride ended uneventfully. The next day Judge Charles C. Laverdiere lifted the quarantine and in his decision said that we all owed the nurse “a debt of gratitude” for her decision to treat Ebola patients.
Much of the buzz surrounding this decision has focused on the issue of Ms. Hickox’s personal freedom and even the constitutionality of her quarantine. But, more importantly, her case represents a rare victory in a key battle in a bigger war, the war between science and fear-based irrational thought. It is a war in which we have incurred too many losses. Hundreds of children have died of illnesses from which they could have been protected by immunization because their parents failed to trust the science.
Scientific thought is on the defensive. It is being poorly taught in school, and sadly a few who claim to be scientists have allowed their egos and greed to taint the results of their experiments. In the vacuum created when science has been ignored, fear and emotionally based decisions dominate.
In the case of Ebola, we all have suffered from the absence of a single voice of authority armed with evidence. It could have been the U.S. Surgeon General if the Senate hadn’t declined to confirm President Barack Obama’s appointment because of his position on gun-related issues.
However, even if we had a surgeon general, the most obvious choice for the role of defender and promoter of evidence-based decisions in a case that is so highly charged should have been the president himself. The country deserved a straight talking, look-em-in-the-eye delineation of the facts, a presentation that acknowledged that there are seldom situations in which the risk is zero, but one that reminded us that the only thing we have to fear is fear itself. However, this president’s style seems to be to step back and delegate when we need someone who will step forward and lead. The result of his abdication has been the confusing and conflicting attempts at leadership by three governors who may have been well intended, but lacked the skills and resources to address the scientific evidence.
In a battle with no general and a commander-in-chief who chose to stay in his tent, science has been rescued temporarily by a courageous young nurse and sage judge from Maine where our state motto is “Dirigo” – I lead.
Dr. Wilkoff practiced primary care pediatrics in Brunswick, Maine, for nearly 40 years. He has authored several books on behavioral pediatrics, including “How to Say No to Your Toddler.” E-mail him at [email protected].
Aunt Millie and the unknown
Fear of the unknown is driving many pediatricians to refer out their patients with simple and easily managed orthopedic and dermatologic complaints. From several perspectives, this tendency to dump and run is unfortunate. For the patients and their families, a trip to the specialist may be expensive, certainly time consuming, and often comes after a long anxiety provoking and frustrating delay.
For the physician worried about her bottom line or who is being told by her practice administrator to see more patients, sending away a patient with a skin rash that can be diagnosed in 30 seconds (10 seconds in many cases) and explained in 5 minutes is a poor business decision. The office time required to make the referral could be as much as $20 while the 10-minute visit probably generates twice that in revenue.
But, the real tragedy is that, by referring out patients with simple dermatologic and orthopedic complaints, the physician is depriving herself of a source of intellectually stimulating variety. Parents appreciate the effort when their child’s doctor demonstrates that she is a more complete physician.
At least when it comes to gap in the dermatology training of pediatricians, there is a glimmer of a solution on the horizon. As reported by this news organization (“What should pediatricians know about dermatology?” Sept. 2014, page 1) the Society of Pediatric Dermatologists convened a committee of pediatricians, family practitioners, and pediatric dermatologists to determine what a pediatrician’s training in dermatology should include with the goal of creating an online pediatric dermatologic curricular for primary care providers.
Exactly how this training should be structured is yet to be determined. However, while we are waiting, I’m going to offer a few suggestions on what a pediatricians’ training in dermatology should look like. I would divide the training into three segments. The first would be a couple of hours of a one-on-one or small-group session with a dermatologist (not necessarily a pediatric dermatologist) in which the students were shown and participated in the Sherlock Holmes deductive reasoning approach that a good diagnostician uses as he approaches an unfamiliar skin lesion. Does it seem to be an “inside” or and “outside” job? Is there a sun exposure distribution? Raised or flat? Does it itch? At a minimum, the doctor in training should learn the language used to describe the lesion.
Second, there should be an hour or two of lectures on the diagnosis and management of common dermatologic conditions that require management, with atopic dermatitis and acne leading the short list. This should include a demonstration on how to do skin scraping for fungus, a simple skill that the select committee rejected based on the complaints of its pediatric members.
Finally, there is what one of my instructors called the “Aunt Millie” diagnoses. The scores of common skin findings that one learns by repeated exposure. “If it looks like Aunt Millie, it’s probably Aunt Millie.” This requires abundant exposure to the scores of patients that fill any busy outpatient setting, some of whom who did not even present with a skin complaint. I am sure that technology exists that would allow each student to keep a list of “must-see” findings on his smartphone. This list is updated as he progresses through his training. The program would keep a live data bank of each trainee’s list. When an instructor (not necessarily a dermatologist, could even be a fellow trainee) encounters a common finding, a quick entry in to his or her smartphone could summon for a quick look some or all the trainees whose data bases reflect that they haven’t seen this finding before. Parents and patients are usually impressed when their skin rash gets the special attention of several doctors. If time allows, there may even be a quick 3-minute explanation of the finding. This kind of sharing has been the hallmark of a good training program for years, but now is the time to let our smartphones and computers expand it to fill an embarrassing gap in our education of pediatricians.
Dr. Wilkoff practiced primary care pediatrics in Brunswick, Maine, for nearly 40 years. He has authored several books on behavioral pediatrics, including “How to Say No to Your Toddler.” E-mail him at [email protected].
Fear of the unknown is driving many pediatricians to refer out their patients with simple and easily managed orthopedic and dermatologic complaints. From several perspectives, this tendency to dump and run is unfortunate. For the patients and their families, a trip to the specialist may be expensive, certainly time consuming, and often comes after a long anxiety provoking and frustrating delay.
For the physician worried about her bottom line or who is being told by her practice administrator to see more patients, sending away a patient with a skin rash that can be diagnosed in 30 seconds (10 seconds in many cases) and explained in 5 minutes is a poor business decision. The office time required to make the referral could be as much as $20 while the 10-minute visit probably generates twice that in revenue.
But, the real tragedy is that, by referring out patients with simple dermatologic and orthopedic complaints, the physician is depriving herself of a source of intellectually stimulating variety. Parents appreciate the effort when their child’s doctor demonstrates that she is a more complete physician.
At least when it comes to gap in the dermatology training of pediatricians, there is a glimmer of a solution on the horizon. As reported by this news organization (“What should pediatricians know about dermatology?” Sept. 2014, page 1) the Society of Pediatric Dermatologists convened a committee of pediatricians, family practitioners, and pediatric dermatologists to determine what a pediatrician’s training in dermatology should include with the goal of creating an online pediatric dermatologic curricular for primary care providers.
Exactly how this training should be structured is yet to be determined. However, while we are waiting, I’m going to offer a few suggestions on what a pediatricians’ training in dermatology should look like. I would divide the training into three segments. The first would be a couple of hours of a one-on-one or small-group session with a dermatologist (not necessarily a pediatric dermatologist) in which the students were shown and participated in the Sherlock Holmes deductive reasoning approach that a good diagnostician uses as he approaches an unfamiliar skin lesion. Does it seem to be an “inside” or and “outside” job? Is there a sun exposure distribution? Raised or flat? Does it itch? At a minimum, the doctor in training should learn the language used to describe the lesion.
Second, there should be an hour or two of lectures on the diagnosis and management of common dermatologic conditions that require management, with atopic dermatitis and acne leading the short list. This should include a demonstration on how to do skin scraping for fungus, a simple skill that the select committee rejected based on the complaints of its pediatric members.
Finally, there is what one of my instructors called the “Aunt Millie” diagnoses. The scores of common skin findings that one learns by repeated exposure. “If it looks like Aunt Millie, it’s probably Aunt Millie.” This requires abundant exposure to the scores of patients that fill any busy outpatient setting, some of whom who did not even present with a skin complaint. I am sure that technology exists that would allow each student to keep a list of “must-see” findings on his smartphone. This list is updated as he progresses through his training. The program would keep a live data bank of each trainee’s list. When an instructor (not necessarily a dermatologist, could even be a fellow trainee) encounters a common finding, a quick entry in to his or her smartphone could summon for a quick look some or all the trainees whose data bases reflect that they haven’t seen this finding before. Parents and patients are usually impressed when their skin rash gets the special attention of several doctors. If time allows, there may even be a quick 3-minute explanation of the finding. This kind of sharing has been the hallmark of a good training program for years, but now is the time to let our smartphones and computers expand it to fill an embarrassing gap in our education of pediatricians.
Dr. Wilkoff practiced primary care pediatrics in Brunswick, Maine, for nearly 40 years. He has authored several books on behavioral pediatrics, including “How to Say No to Your Toddler.” E-mail him at [email protected].
Fear of the unknown is driving many pediatricians to refer out their patients with simple and easily managed orthopedic and dermatologic complaints. From several perspectives, this tendency to dump and run is unfortunate. For the patients and their families, a trip to the specialist may be expensive, certainly time consuming, and often comes after a long anxiety provoking and frustrating delay.
For the physician worried about her bottom line or who is being told by her practice administrator to see more patients, sending away a patient with a skin rash that can be diagnosed in 30 seconds (10 seconds in many cases) and explained in 5 minutes is a poor business decision. The office time required to make the referral could be as much as $20 while the 10-minute visit probably generates twice that in revenue.
But, the real tragedy is that, by referring out patients with simple dermatologic and orthopedic complaints, the physician is depriving herself of a source of intellectually stimulating variety. Parents appreciate the effort when their child’s doctor demonstrates that she is a more complete physician.
At least when it comes to gap in the dermatology training of pediatricians, there is a glimmer of a solution on the horizon. As reported by this news organization (“What should pediatricians know about dermatology?” Sept. 2014, page 1) the Society of Pediatric Dermatologists convened a committee of pediatricians, family practitioners, and pediatric dermatologists to determine what a pediatrician’s training in dermatology should include with the goal of creating an online pediatric dermatologic curricular for primary care providers.
Exactly how this training should be structured is yet to be determined. However, while we are waiting, I’m going to offer a few suggestions on what a pediatricians’ training in dermatology should look like. I would divide the training into three segments. The first would be a couple of hours of a one-on-one or small-group session with a dermatologist (not necessarily a pediatric dermatologist) in which the students were shown and participated in the Sherlock Holmes deductive reasoning approach that a good diagnostician uses as he approaches an unfamiliar skin lesion. Does it seem to be an “inside” or and “outside” job? Is there a sun exposure distribution? Raised or flat? Does it itch? At a minimum, the doctor in training should learn the language used to describe the lesion.
Second, there should be an hour or two of lectures on the diagnosis and management of common dermatologic conditions that require management, with atopic dermatitis and acne leading the short list. This should include a demonstration on how to do skin scraping for fungus, a simple skill that the select committee rejected based on the complaints of its pediatric members.
Finally, there is what one of my instructors called the “Aunt Millie” diagnoses. The scores of common skin findings that one learns by repeated exposure. “If it looks like Aunt Millie, it’s probably Aunt Millie.” This requires abundant exposure to the scores of patients that fill any busy outpatient setting, some of whom who did not even present with a skin complaint. I am sure that technology exists that would allow each student to keep a list of “must-see” findings on his smartphone. This list is updated as he progresses through his training. The program would keep a live data bank of each trainee’s list. When an instructor (not necessarily a dermatologist, could even be a fellow trainee) encounters a common finding, a quick entry in to his or her smartphone could summon for a quick look some or all the trainees whose data bases reflect that they haven’t seen this finding before. Parents and patients are usually impressed when their skin rash gets the special attention of several doctors. If time allows, there may even be a quick 3-minute explanation of the finding. This kind of sharing has been the hallmark of a good training program for years, but now is the time to let our smartphones and computers expand it to fill an embarrassing gap in our education of pediatricians.
Dr. Wilkoff practiced primary care pediatrics in Brunswick, Maine, for nearly 40 years. He has authored several books on behavioral pediatrics, including “How to Say No to Your Toddler.” E-mail him at [email protected].
Under My Skin: Neglect
Two disturbing patients came by last week.
The first was a frail old man. His daughter brought him. She said he’d been living in Florida and “shown up” on her doorstep.
As a dermatologist, I’m not often thrown by what I see, but this unfortunate man’s face was hard to look at, with a gaping hole where his left nasolabial fold should have been.
How long had the cancer been there to gouge that hole? How could he neglect it so long? What kind of relationship (or nonrelationship) with his child did it take for this to happen?
I didn’t pursue these questions. Instead, I referred him and his daughter to a skin oncology center where, I hoped, therapy could manage a situation whose severity could surely have been prevented.
Two days later, a Russian woman came in. Remarkably hale at the age of 95 years, she spoke no English. The man who accompanied her, a relative youngster in his mid-70’s, was not a relative, just a stranger who took pity on a fellow visitor to a Russian senior center. “She has two sons,” he explained, “but they live in Minnesota and Texas.”
Her problem was also a basal cell, but this one was on the back of her right ear, large but manageable. I arranged to remove the lesion and offered to speak with her sons. Neither ever called.
Disease is a physical problem in a social context. Patients often present with problems they ignored until other people insisted they take care of them. Parents bring their children. Women drag their husbands. Patients tolerate their itch until their coworkers get annoyed “at seeing me scratch like a monkey.” In situations like these – you can come up with many others – the problem is not just with the patients, but with the people in their vicinity. Sometimes there are people in patients’ lives who notice and care, who demand, “Have that looked at!” But what if nobody cares? Or what if there is no one around at all?
Factors like mental, family, and social dysfunction often underlie whether and to what extent the diseases we diagnose get treated. As practicing physicians, we have little control over such factors. We just try to manage what presents in our offices.
So we make assumptions– that patients can afford to see us, that they have the common sense to come, that they have family or friends who encourage them to come and make doing that possible.
In cases like the ones I’ve just described, these assumptions were wrong. The old man from Florida probably rarely left his apartment, and when he did people just looked away in disgust. He wasn’t their problem. In both cases family was nowhere to be found. How many such lonely and neglected people are there with no support systems, who don’t show up on our office doorstep until it is hard or impossible to take care of them?
I sometimes think back to a case that has haunted me since my early years, when I worked in several Boston-area health centers and sometimes made house calls in gritty neighborhoods. One day I was called to see a patient on the first floor of a rundown example of one of Boston’s wood-frame triple-deckers.
The front door was open. No one was around. I wandered past the parlor into a bedroom. There lay the patient: A woman in late middle age, lying on her back in a dirty nightgown, staring at the ceiling. That image has haunted me for 30 years.
I no longer remember what her skin problem was, just the pitiful sight of her and all the questions it raised: Where was everybody? Who looked after this woman? Who cooked for her, shopped for her? If I prescribed something, who would see that she got it and used it?
I didn’t know. Even if I did, there was nothing I could do about it. Doctors in practice can’t make families stay together, or weave a social safety net that neglected people don’t slip through.
When something lies beyond the scope of what you take to be your responsibility, it’s easier to look away. Now and then a neglected patient forces us to face our own limitations and pay attention to what we have been not looking at.
Dr. Rockoff practices dermatology in Brookline, Mass., and is a longtime contributor to Skin & Allergy News. He serves on the clinical faculty at Tufts University, Boston, and has taught senior medical students and other trainees for 30 years.
Two disturbing patients came by last week.
The first was a frail old man. His daughter brought him. She said he’d been living in Florida and “shown up” on her doorstep.
As a dermatologist, I’m not often thrown by what I see, but this unfortunate man’s face was hard to look at, with a gaping hole where his left nasolabial fold should have been.
How long had the cancer been there to gouge that hole? How could he neglect it so long? What kind of relationship (or nonrelationship) with his child did it take for this to happen?
I didn’t pursue these questions. Instead, I referred him and his daughter to a skin oncology center where, I hoped, therapy could manage a situation whose severity could surely have been prevented.
Two days later, a Russian woman came in. Remarkably hale at the age of 95 years, she spoke no English. The man who accompanied her, a relative youngster in his mid-70’s, was not a relative, just a stranger who took pity on a fellow visitor to a Russian senior center. “She has two sons,” he explained, “but they live in Minnesota and Texas.”
Her problem was also a basal cell, but this one was on the back of her right ear, large but manageable. I arranged to remove the lesion and offered to speak with her sons. Neither ever called.
Disease is a physical problem in a social context. Patients often present with problems they ignored until other people insisted they take care of them. Parents bring their children. Women drag their husbands. Patients tolerate their itch until their coworkers get annoyed “at seeing me scratch like a monkey.” In situations like these – you can come up with many others – the problem is not just with the patients, but with the people in their vicinity. Sometimes there are people in patients’ lives who notice and care, who demand, “Have that looked at!” But what if nobody cares? Or what if there is no one around at all?
Factors like mental, family, and social dysfunction often underlie whether and to what extent the diseases we diagnose get treated. As practicing physicians, we have little control over such factors. We just try to manage what presents in our offices.
So we make assumptions– that patients can afford to see us, that they have the common sense to come, that they have family or friends who encourage them to come and make doing that possible.
In cases like the ones I’ve just described, these assumptions were wrong. The old man from Florida probably rarely left his apartment, and when he did people just looked away in disgust. He wasn’t their problem. In both cases family was nowhere to be found. How many such lonely and neglected people are there with no support systems, who don’t show up on our office doorstep until it is hard or impossible to take care of them?
I sometimes think back to a case that has haunted me since my early years, when I worked in several Boston-area health centers and sometimes made house calls in gritty neighborhoods. One day I was called to see a patient on the first floor of a rundown example of one of Boston’s wood-frame triple-deckers.
The front door was open. No one was around. I wandered past the parlor into a bedroom. There lay the patient: A woman in late middle age, lying on her back in a dirty nightgown, staring at the ceiling. That image has haunted me for 30 years.
I no longer remember what her skin problem was, just the pitiful sight of her and all the questions it raised: Where was everybody? Who looked after this woman? Who cooked for her, shopped for her? If I prescribed something, who would see that she got it and used it?
I didn’t know. Even if I did, there was nothing I could do about it. Doctors in practice can’t make families stay together, or weave a social safety net that neglected people don’t slip through.
When something lies beyond the scope of what you take to be your responsibility, it’s easier to look away. Now and then a neglected patient forces us to face our own limitations and pay attention to what we have been not looking at.
Dr. Rockoff practices dermatology in Brookline, Mass., and is a longtime contributor to Skin & Allergy News. He serves on the clinical faculty at Tufts University, Boston, and has taught senior medical students and other trainees for 30 years.
Two disturbing patients came by last week.
The first was a frail old man. His daughter brought him. She said he’d been living in Florida and “shown up” on her doorstep.
As a dermatologist, I’m not often thrown by what I see, but this unfortunate man’s face was hard to look at, with a gaping hole where his left nasolabial fold should have been.
How long had the cancer been there to gouge that hole? How could he neglect it so long? What kind of relationship (or nonrelationship) with his child did it take for this to happen?
I didn’t pursue these questions. Instead, I referred him and his daughter to a skin oncology center where, I hoped, therapy could manage a situation whose severity could surely have been prevented.
Two days later, a Russian woman came in. Remarkably hale at the age of 95 years, she spoke no English. The man who accompanied her, a relative youngster in his mid-70’s, was not a relative, just a stranger who took pity on a fellow visitor to a Russian senior center. “She has two sons,” he explained, “but they live in Minnesota and Texas.”
Her problem was also a basal cell, but this one was on the back of her right ear, large but manageable. I arranged to remove the lesion and offered to speak with her sons. Neither ever called.
Disease is a physical problem in a social context. Patients often present with problems they ignored until other people insisted they take care of them. Parents bring their children. Women drag their husbands. Patients tolerate their itch until their coworkers get annoyed “at seeing me scratch like a monkey.” In situations like these – you can come up with many others – the problem is not just with the patients, but with the people in their vicinity. Sometimes there are people in patients’ lives who notice and care, who demand, “Have that looked at!” But what if nobody cares? Or what if there is no one around at all?
Factors like mental, family, and social dysfunction often underlie whether and to what extent the diseases we diagnose get treated. As practicing physicians, we have little control over such factors. We just try to manage what presents in our offices.
So we make assumptions– that patients can afford to see us, that they have the common sense to come, that they have family or friends who encourage them to come and make doing that possible.
In cases like the ones I’ve just described, these assumptions were wrong. The old man from Florida probably rarely left his apartment, and when he did people just looked away in disgust. He wasn’t their problem. In both cases family was nowhere to be found. How many such lonely and neglected people are there with no support systems, who don’t show up on our office doorstep until it is hard or impossible to take care of them?
I sometimes think back to a case that has haunted me since my early years, when I worked in several Boston-area health centers and sometimes made house calls in gritty neighborhoods. One day I was called to see a patient on the first floor of a rundown example of one of Boston’s wood-frame triple-deckers.
The front door was open. No one was around. I wandered past the parlor into a bedroom. There lay the patient: A woman in late middle age, lying on her back in a dirty nightgown, staring at the ceiling. That image has haunted me for 30 years.
I no longer remember what her skin problem was, just the pitiful sight of her and all the questions it raised: Where was everybody? Who looked after this woman? Who cooked for her, shopped for her? If I prescribed something, who would see that she got it and used it?
I didn’t know. Even if I did, there was nothing I could do about it. Doctors in practice can’t make families stay together, or weave a social safety net that neglected people don’t slip through.
When something lies beyond the scope of what you take to be your responsibility, it’s easier to look away. Now and then a neglected patient forces us to face our own limitations and pay attention to what we have been not looking at.
Dr. Rockoff practices dermatology in Brookline, Mass., and is a longtime contributor to Skin & Allergy News. He serves on the clinical faculty at Tufts University, Boston, and has taught senior medical students and other trainees for 30 years.
The Right Choice? Paternalism, Autonomy, and the Incidental Finding
The case had been straightforward. My patient had primary hyperparathyroidism and her localization studies had shown a single parathyroid adenoma. In the operating room, with her under general anesthesia, I had found and removed the abnormal parathyroid gland. The intraoperative parathyroid hormone levels were being run outside the OR door. I was getting ready to close with my fellow when I happened to palpate the thyroid isthmus. There was a firm nodule right in the center of the isthmus. The thyroid looked fine, but the nodule was unmistakable.
This was a surprise. The patient had undergone an ultrasound in radiology the week before, and the study was notable for there being no thyroid nodules. We had performed our own ultrasound in the OR. We had confirmed the location of the parathyroid adenoma and saw no thyroid nodules. I was faced with the initial question of what to do with this incidental finding. Although I could not see the nodule, certainly by feel, it was suspicious, but it was also very small – several millimeters at most. One option was to simply ignore the finding – certainly a bad choice. I knew that the patient had come to the hospital with her sister and a close friend. They were both in the waiting room expecting my update as soon as we were finished. I could have discussed this unexpected finding with the sister and friend, but I felt certain that no one would object to me removing a small piece of thyroid when this added little or no risk. It seemed unnecessary to seek permission to do this small additional procedure.
We proceeded to resect the nodule within the thyroid gland, taking enough adjacent thyroid tissue that I never actually saw the nodule. Once it was removed, I faced another question: Should I send it for frozen section? This seemed to be an easy one to answer. If I was suspicious enough to remove it, I should also know what it is.
The frozen section report was called in a short time later. It was a 4-mm papillary thyroid cancer (PTC) that was within normal thyroid tissue. I had been expecting this possible result. Now I had more choices. I could talk with the family/friend in the waiting room and seek advice on what to do. Alternatively, I could simply say that the presence of PTC was enough of a reason to just take out the thyroid gland since I had not expected this finding and the negative preoperative ultrasound had certainly missed this small tumor (and there might even be others). Finally, I could simply close the patient based on the fact that a 4-mm PTC is of no real clinical significance. Certainly, if this small PTC had been removed with a thyroid lobe for other reasons, we would never go back to take out the rest of the thyroid gland.
As I considered these options, it seemed clear to me that if I went to talk with the family/friend with an unexpected diagnosis of cancer, it was very likely that the patient would wind up with a bigger operation than might be necessary. Ten or fifteen years ago, most surgeons would have removed the thyroid gland for almost any diagnosis of PTC so that patients could go on to receive radioactive iodine. However, today many patients with small incidental PTCs found on lobectomy are simply followed with surveillance ultrasounds because the risks of recurrence or spread are very low. It was clear that I had no basis to take out the whole thyroid gland for a small PTC that was already out. It also seemed unwise to ask what to do, when I felt certain that I knew what was best for the patient. Of course, the suggestion that “I knew what was best for the patient” is a very paternalistic thing to say. It suggests that the medical issues trump all others. It is also quite contrary to the movement of medical ethics in the last several decades that has emphasized shared decision making yet doing what is best for the patient is what surgical patients expect of their surgeons.
I decided to close the patient and then explain what I did and why I did it. She might have been angry with me that I had found a cancer and had not taken out her thyroid gland. However, I felt that the medical evidence supported a less-aggressive surgical approach. In addition, I could always take out her thyroid if she was too worried by the concept of surveillance but I could never put it back if I had removed it!
The patient was understandably surprised and concerned when talked to her. Her first response was one of concern about recurrence. She wanted to know how I knew that there was no more cancer in her thyroid gland. I explained that I actually could not know that, but based on the ultrasound, there was no evidence of any clinically significant thyroid cancer. Fortunately, she was ultimately relieved that the thyroid cancer had been found even though it raised concerns for the future that she had never considered previously.
Whenever surgeons operate on patients under general anesthesia, we are faced with the potential need to make decisions for our patients without the patient’s input. Sometimes it is appropriate to seek input from family when there are multiple good options. However, surgery requires surgeons to make many decisions on their patient’s behalf with no input from the patient – that is, surgeons are expected to act paternalistically in the OR. Rather than being detrimental to the ethical care of patients, such limited paternalism is sometimes the best that we can offer our patients and critical to our role as surgeon.
Dr. Angelos is an ACS Fellow; the Linda Kohler Anderson Professor of Surgery and Surgical Ethics; chief, endocrine surgery; and associate director of the MacLean Center for Clinical Medical Ethics at the University of Chicago.
The case had been straightforward. My patient had primary hyperparathyroidism and her localization studies had shown a single parathyroid adenoma. In the operating room, with her under general anesthesia, I had found and removed the abnormal parathyroid gland. The intraoperative parathyroid hormone levels were being run outside the OR door. I was getting ready to close with my fellow when I happened to palpate the thyroid isthmus. There was a firm nodule right in the center of the isthmus. The thyroid looked fine, but the nodule was unmistakable.
This was a surprise. The patient had undergone an ultrasound in radiology the week before, and the study was notable for there being no thyroid nodules. We had performed our own ultrasound in the OR. We had confirmed the location of the parathyroid adenoma and saw no thyroid nodules. I was faced with the initial question of what to do with this incidental finding. Although I could not see the nodule, certainly by feel, it was suspicious, but it was also very small – several millimeters at most. One option was to simply ignore the finding – certainly a bad choice. I knew that the patient had come to the hospital with her sister and a close friend. They were both in the waiting room expecting my update as soon as we were finished. I could have discussed this unexpected finding with the sister and friend, but I felt certain that no one would object to me removing a small piece of thyroid when this added little or no risk. It seemed unnecessary to seek permission to do this small additional procedure.
We proceeded to resect the nodule within the thyroid gland, taking enough adjacent thyroid tissue that I never actually saw the nodule. Once it was removed, I faced another question: Should I send it for frozen section? This seemed to be an easy one to answer. If I was suspicious enough to remove it, I should also know what it is.
The frozen section report was called in a short time later. It was a 4-mm papillary thyroid cancer (PTC) that was within normal thyroid tissue. I had been expecting this possible result. Now I had more choices. I could talk with the family/friend in the waiting room and seek advice on what to do. Alternatively, I could simply say that the presence of PTC was enough of a reason to just take out the thyroid gland since I had not expected this finding and the negative preoperative ultrasound had certainly missed this small tumor (and there might even be others). Finally, I could simply close the patient based on the fact that a 4-mm PTC is of no real clinical significance. Certainly, if this small PTC had been removed with a thyroid lobe for other reasons, we would never go back to take out the rest of the thyroid gland.
As I considered these options, it seemed clear to me that if I went to talk with the family/friend with an unexpected diagnosis of cancer, it was very likely that the patient would wind up with a bigger operation than might be necessary. Ten or fifteen years ago, most surgeons would have removed the thyroid gland for almost any diagnosis of PTC so that patients could go on to receive radioactive iodine. However, today many patients with small incidental PTCs found on lobectomy are simply followed with surveillance ultrasounds because the risks of recurrence or spread are very low. It was clear that I had no basis to take out the whole thyroid gland for a small PTC that was already out. It also seemed unwise to ask what to do, when I felt certain that I knew what was best for the patient. Of course, the suggestion that “I knew what was best for the patient” is a very paternalistic thing to say. It suggests that the medical issues trump all others. It is also quite contrary to the movement of medical ethics in the last several decades that has emphasized shared decision making yet doing what is best for the patient is what surgical patients expect of their surgeons.
I decided to close the patient and then explain what I did and why I did it. She might have been angry with me that I had found a cancer and had not taken out her thyroid gland. However, I felt that the medical evidence supported a less-aggressive surgical approach. In addition, I could always take out her thyroid if she was too worried by the concept of surveillance but I could never put it back if I had removed it!
The patient was understandably surprised and concerned when talked to her. Her first response was one of concern about recurrence. She wanted to know how I knew that there was no more cancer in her thyroid gland. I explained that I actually could not know that, but based on the ultrasound, there was no evidence of any clinically significant thyroid cancer. Fortunately, she was ultimately relieved that the thyroid cancer had been found even though it raised concerns for the future that she had never considered previously.
Whenever surgeons operate on patients under general anesthesia, we are faced with the potential need to make decisions for our patients without the patient’s input. Sometimes it is appropriate to seek input from family when there are multiple good options. However, surgery requires surgeons to make many decisions on their patient’s behalf with no input from the patient – that is, surgeons are expected to act paternalistically in the OR. Rather than being detrimental to the ethical care of patients, such limited paternalism is sometimes the best that we can offer our patients and critical to our role as surgeon.
Dr. Angelos is an ACS Fellow; the Linda Kohler Anderson Professor of Surgery and Surgical Ethics; chief, endocrine surgery; and associate director of the MacLean Center for Clinical Medical Ethics at the University of Chicago.
The case had been straightforward. My patient had primary hyperparathyroidism and her localization studies had shown a single parathyroid adenoma. In the operating room, with her under general anesthesia, I had found and removed the abnormal parathyroid gland. The intraoperative parathyroid hormone levels were being run outside the OR door. I was getting ready to close with my fellow when I happened to palpate the thyroid isthmus. There was a firm nodule right in the center of the isthmus. The thyroid looked fine, but the nodule was unmistakable.
This was a surprise. The patient had undergone an ultrasound in radiology the week before, and the study was notable for there being no thyroid nodules. We had performed our own ultrasound in the OR. We had confirmed the location of the parathyroid adenoma and saw no thyroid nodules. I was faced with the initial question of what to do with this incidental finding. Although I could not see the nodule, certainly by feel, it was suspicious, but it was also very small – several millimeters at most. One option was to simply ignore the finding – certainly a bad choice. I knew that the patient had come to the hospital with her sister and a close friend. They were both in the waiting room expecting my update as soon as we were finished. I could have discussed this unexpected finding with the sister and friend, but I felt certain that no one would object to me removing a small piece of thyroid when this added little or no risk. It seemed unnecessary to seek permission to do this small additional procedure.
We proceeded to resect the nodule within the thyroid gland, taking enough adjacent thyroid tissue that I never actually saw the nodule. Once it was removed, I faced another question: Should I send it for frozen section? This seemed to be an easy one to answer. If I was suspicious enough to remove it, I should also know what it is.
The frozen section report was called in a short time later. It was a 4-mm papillary thyroid cancer (PTC) that was within normal thyroid tissue. I had been expecting this possible result. Now I had more choices. I could talk with the family/friend in the waiting room and seek advice on what to do. Alternatively, I could simply say that the presence of PTC was enough of a reason to just take out the thyroid gland since I had not expected this finding and the negative preoperative ultrasound had certainly missed this small tumor (and there might even be others). Finally, I could simply close the patient based on the fact that a 4-mm PTC is of no real clinical significance. Certainly, if this small PTC had been removed with a thyroid lobe for other reasons, we would never go back to take out the rest of the thyroid gland.
As I considered these options, it seemed clear to me that if I went to talk with the family/friend with an unexpected diagnosis of cancer, it was very likely that the patient would wind up with a bigger operation than might be necessary. Ten or fifteen years ago, most surgeons would have removed the thyroid gland for almost any diagnosis of PTC so that patients could go on to receive radioactive iodine. However, today many patients with small incidental PTCs found on lobectomy are simply followed with surveillance ultrasounds because the risks of recurrence or spread are very low. It was clear that I had no basis to take out the whole thyroid gland for a small PTC that was already out. It also seemed unwise to ask what to do, when I felt certain that I knew what was best for the patient. Of course, the suggestion that “I knew what was best for the patient” is a very paternalistic thing to say. It suggests that the medical issues trump all others. It is also quite contrary to the movement of medical ethics in the last several decades that has emphasized shared decision making yet doing what is best for the patient is what surgical patients expect of their surgeons.
I decided to close the patient and then explain what I did and why I did it. She might have been angry with me that I had found a cancer and had not taken out her thyroid gland. However, I felt that the medical evidence supported a less-aggressive surgical approach. In addition, I could always take out her thyroid if she was too worried by the concept of surveillance but I could never put it back if I had removed it!
The patient was understandably surprised and concerned when talked to her. Her first response was one of concern about recurrence. She wanted to know how I knew that there was no more cancer in her thyroid gland. I explained that I actually could not know that, but based on the ultrasound, there was no evidence of any clinically significant thyroid cancer. Fortunately, she was ultimately relieved that the thyroid cancer had been found even though it raised concerns for the future that she had never considered previously.
Whenever surgeons operate on patients under general anesthesia, we are faced with the potential need to make decisions for our patients without the patient’s input. Sometimes it is appropriate to seek input from family when there are multiple good options. However, surgery requires surgeons to make many decisions on their patient’s behalf with no input from the patient – that is, surgeons are expected to act paternalistically in the OR. Rather than being detrimental to the ethical care of patients, such limited paternalism is sometimes the best that we can offer our patients and critical to our role as surgeon.
Dr. Angelos is an ACS Fellow; the Linda Kohler Anderson Professor of Surgery and Surgical Ethics; chief, endocrine surgery; and associate director of the MacLean Center for Clinical Medical Ethics at the University of Chicago.
Sharing is caring: A primer on EHR interoperability
The debate over the future of meaningful use seems to have found its bellwether issue: interoperability. For the uninitiated, this is the concept of sharing patient information across systems with the promise of improving the ease and quality of care. As you might expect, it is full of challenges, not the least of which is standardization. Competing vendors of electronic health record (EHR) software and technological hurdles have made the goal of true interoperability quite elusive, and there is no clear path to victory. Meaningful use and other incentive programs have set requirements for widespread rapid adoption of data sharing. Unfortunately, instead of encouraging innovation, they seem only to have created more stumbling blocks for physicians. Now providers are facing penalties for noncompliance, and national physician advocacy groups are taking notice.
On Oct. 15 of this year, a letter from key stakeholders including the American Medical Association (AMA), American Academy of Family Physicians (AAFP), and Medical Group Management Association (MGMA) to the Department of Health and Human Services laid out a “blueprint” for revamping the meaningful use program. The center point of this communication was a call for more emphasis on interoperability, as well as flexibility for both vendors and physicians. We tend to agree with these ideas, but wonder on a global scale what this interoperability should look like. In this column, we’ll address the essential pieces to making this a reality, and how physicians and patients can benefit from enhanced information exchange.
Information should be standardized
One of the fundamental challenges standing in the way of true interoperability is standardization: allowing data to be shared and viewed anywhere, independent of hardware or software. This is an idea that has allowed the World Wide Web to flourish; websites are readable by any computer or mobile device, using any operating system or browser. As of now, very little standardization exists in the world of medical data, in part because EHRs have been developed and promoted by private corporations, all competing for market share.
This evolution is quite unlike the history of the Internet, which was developed by government and educational institutions, with the express intent of connecting disparate computer systems. EHRs have essentially been developed in isolation, with much more emphasis placed on keeping information private than on making it shareable. Now meaningful use is forcing vendors to share data across systems, and – not surprisingly – each vendor is attempting to create their own method of doing so.
Some argue that EHR companies would prefer not to share, as this might threaten their hold on the market. In fact, Epic Health Systems, the world’s largest EHR vendor, has recently faced accusations of limiting interoperability to encourage physicians to use its software exclusively. Epic has fired back with statistics pointing to its accomplishments in data exchange. Both sides clearly disagree on what true interoperability should look like. This underscores a critical point: The concept of interoperability and what the standards should look like may mean different things to different parties.
One attempt at standardization that is commonly referenced is the continuity of care document (CCD), a key requirement for data exchange outlined in Stage 2 of meaningful use. This document, endorsed by the U.S. Healthcare Information Technology Standards Panel, has gained popularity as it can contain large amounts of data in one file. Unfortunately, it too is still limited and often isn’t user friendly at the point of care. It is in many ways merely a jumping-off point that will hopefully facilitate improved data accessibility and ease of sharing.
To improve usability and confidence in data exchange, many practices and health systems have joined together to create Regional Health Information Organizations and provide some governance structure to the process of data exchange. We strongly recommend getting involved in such an organization and engaging in the process of standardization. Regardless of your position on the usefulness or practicality of sharing patient records, a few notions are indisputable: Interoperability is coming, and point-of-care data availability – if accurate, secure, and useful – can ultimately usher in the promise of better patient care.
Information should be secure
In the process of seeking easier data exchange, we cannot lose sight of the importance of data security. Health care entities need to feel confident the information they are sending electronically will stay private until it reaches its ultimate destination. An attempt to address this issue led to the development of the “direct” encryption standard in 2010. Also known as Direct Exchange and Direct Secure Messaging, it specifies a secure method for the exchange of Protected Health Information. Providers can take advantage of the security offered through Direct by developing their own infrastructure or engaging the services of a Health Information Service Provider. These are private, HIPAA-compliant data exchange services that serve a health care community and facilitate direct messaging between health care settings. Ultimately, the goal is to create a robust Nationwide Health Information Network and achieve true widespread health information exchange. But before we actually achieve this, there is one more element essential to interoperability and improving patient care.
The information should be useful
In the preliminary stages of EHR interoperability, attempts at meaningful information exchange have led to only modest success. Outside of private health systems that have developed their own proprietary interfaces, data extraction and sharing between disparate electronic platforms have yet to have a meaningful impact on patient care. In part, this is because the information is not provided to clinicians in a useful format. Even the CCD described above is often confusing and replete with extraneous information – filtering through it during a patient encounter can be tedious and frustrating. Also, ensuring data integrity can be a real challenge, not only technically, but also practically. Questions occur regularly, such as “Did the data come through in the correct fields?” or “Did the medical resident remember to include all of the medications or allergies associated with the patient?” Ultimately, physicians need to decide whether or not to trust the information they receive before making it a permanent part of a patient’s health record.
Dr. Notte is a family physician and clinical informaticist for Abington (Pa.) Memorial Hospital. He is a partner in EHR Practice Consultants, a firm that aids physicians in adopting electronic health records. Dr. Skolnik is associate director of the family medicine residency program at Abington Memorial Hospital and professor of family and community medicine at Temple University in Philadelphia.
The debate over the future of meaningful use seems to have found its bellwether issue: interoperability. For the uninitiated, this is the concept of sharing patient information across systems with the promise of improving the ease and quality of care. As you might expect, it is full of challenges, not the least of which is standardization. Competing vendors of electronic health record (EHR) software and technological hurdles have made the goal of true interoperability quite elusive, and there is no clear path to victory. Meaningful use and other incentive programs have set requirements for widespread rapid adoption of data sharing. Unfortunately, instead of encouraging innovation, they seem only to have created more stumbling blocks for physicians. Now providers are facing penalties for noncompliance, and national physician advocacy groups are taking notice.
On Oct. 15 of this year, a letter from key stakeholders including the American Medical Association (AMA), American Academy of Family Physicians (AAFP), and Medical Group Management Association (MGMA) to the Department of Health and Human Services laid out a “blueprint” for revamping the meaningful use program. The center point of this communication was a call for more emphasis on interoperability, as well as flexibility for both vendors and physicians. We tend to agree with these ideas, but wonder on a global scale what this interoperability should look like. In this column, we’ll address the essential pieces to making this a reality, and how physicians and patients can benefit from enhanced information exchange.
Information should be standardized
One of the fundamental challenges standing in the way of true interoperability is standardization: allowing data to be shared and viewed anywhere, independent of hardware or software. This is an idea that has allowed the World Wide Web to flourish; websites are readable by any computer or mobile device, using any operating system or browser. As of now, very little standardization exists in the world of medical data, in part because EHRs have been developed and promoted by private corporations, all competing for market share.
This evolution is quite unlike the history of the Internet, which was developed by government and educational institutions, with the express intent of connecting disparate computer systems. EHRs have essentially been developed in isolation, with much more emphasis placed on keeping information private than on making it shareable. Now meaningful use is forcing vendors to share data across systems, and – not surprisingly – each vendor is attempting to create their own method of doing so.
Some argue that EHR companies would prefer not to share, as this might threaten their hold on the market. In fact, Epic Health Systems, the world’s largest EHR vendor, has recently faced accusations of limiting interoperability to encourage physicians to use its software exclusively. Epic has fired back with statistics pointing to its accomplishments in data exchange. Both sides clearly disagree on what true interoperability should look like. This underscores a critical point: The concept of interoperability and what the standards should look like may mean different things to different parties.
One attempt at standardization that is commonly referenced is the continuity of care document (CCD), a key requirement for data exchange outlined in Stage 2 of meaningful use. This document, endorsed by the U.S. Healthcare Information Technology Standards Panel, has gained popularity as it can contain large amounts of data in one file. Unfortunately, it too is still limited and often isn’t user friendly at the point of care. It is in many ways merely a jumping-off point that will hopefully facilitate improved data accessibility and ease of sharing.
To improve usability and confidence in data exchange, many practices and health systems have joined together to create Regional Health Information Organizations and provide some governance structure to the process of data exchange. We strongly recommend getting involved in such an organization and engaging in the process of standardization. Regardless of your position on the usefulness or practicality of sharing patient records, a few notions are indisputable: Interoperability is coming, and point-of-care data availability – if accurate, secure, and useful – can ultimately usher in the promise of better patient care.
Information should be secure
In the process of seeking easier data exchange, we cannot lose sight of the importance of data security. Health care entities need to feel confident the information they are sending electronically will stay private until it reaches its ultimate destination. An attempt to address this issue led to the development of the “direct” encryption standard in 2010. Also known as Direct Exchange and Direct Secure Messaging, it specifies a secure method for the exchange of Protected Health Information. Providers can take advantage of the security offered through Direct by developing their own infrastructure or engaging the services of a Health Information Service Provider. These are private, HIPAA-compliant data exchange services that serve a health care community and facilitate direct messaging between health care settings. Ultimately, the goal is to create a robust Nationwide Health Information Network and achieve true widespread health information exchange. But before we actually achieve this, there is one more element essential to interoperability and improving patient care.
The information should be useful
In the preliminary stages of EHR interoperability, attempts at meaningful information exchange have led to only modest success. Outside of private health systems that have developed their own proprietary interfaces, data extraction and sharing between disparate electronic platforms have yet to have a meaningful impact on patient care. In part, this is because the information is not provided to clinicians in a useful format. Even the CCD described above is often confusing and replete with extraneous information – filtering through it during a patient encounter can be tedious and frustrating. Also, ensuring data integrity can be a real challenge, not only technically, but also practically. Questions occur regularly, such as “Did the data come through in the correct fields?” or “Did the medical resident remember to include all of the medications or allergies associated with the patient?” Ultimately, physicians need to decide whether or not to trust the information they receive before making it a permanent part of a patient’s health record.
Dr. Notte is a family physician and clinical informaticist for Abington (Pa.) Memorial Hospital. He is a partner in EHR Practice Consultants, a firm that aids physicians in adopting electronic health records. Dr. Skolnik is associate director of the family medicine residency program at Abington Memorial Hospital and professor of family and community medicine at Temple University in Philadelphia.
The debate over the future of meaningful use seems to have found its bellwether issue: interoperability. For the uninitiated, this is the concept of sharing patient information across systems with the promise of improving the ease and quality of care. As you might expect, it is full of challenges, not the least of which is standardization. Competing vendors of electronic health record (EHR) software and technological hurdles have made the goal of true interoperability quite elusive, and there is no clear path to victory. Meaningful use and other incentive programs have set requirements for widespread rapid adoption of data sharing. Unfortunately, instead of encouraging innovation, they seem only to have created more stumbling blocks for physicians. Now providers are facing penalties for noncompliance, and national physician advocacy groups are taking notice.
On Oct. 15 of this year, a letter from key stakeholders including the American Medical Association (AMA), American Academy of Family Physicians (AAFP), and Medical Group Management Association (MGMA) to the Department of Health and Human Services laid out a “blueprint” for revamping the meaningful use program. The center point of this communication was a call for more emphasis on interoperability, as well as flexibility for both vendors and physicians. We tend to agree with these ideas, but wonder on a global scale what this interoperability should look like. In this column, we’ll address the essential pieces to making this a reality, and how physicians and patients can benefit from enhanced information exchange.
Information should be standardized
One of the fundamental challenges standing in the way of true interoperability is standardization: allowing data to be shared and viewed anywhere, independent of hardware or software. This is an idea that has allowed the World Wide Web to flourish; websites are readable by any computer or mobile device, using any operating system or browser. As of now, very little standardization exists in the world of medical data, in part because EHRs have been developed and promoted by private corporations, all competing for market share.
This evolution is quite unlike the history of the Internet, which was developed by government and educational institutions, with the express intent of connecting disparate computer systems. EHRs have essentially been developed in isolation, with much more emphasis placed on keeping information private than on making it shareable. Now meaningful use is forcing vendors to share data across systems, and – not surprisingly – each vendor is attempting to create their own method of doing so.
Some argue that EHR companies would prefer not to share, as this might threaten their hold on the market. In fact, Epic Health Systems, the world’s largest EHR vendor, has recently faced accusations of limiting interoperability to encourage physicians to use its software exclusively. Epic has fired back with statistics pointing to its accomplishments in data exchange. Both sides clearly disagree on what true interoperability should look like. This underscores a critical point: The concept of interoperability and what the standards should look like may mean different things to different parties.
One attempt at standardization that is commonly referenced is the continuity of care document (CCD), a key requirement for data exchange outlined in Stage 2 of meaningful use. This document, endorsed by the U.S. Healthcare Information Technology Standards Panel, has gained popularity as it can contain large amounts of data in one file. Unfortunately, it too is still limited and often isn’t user friendly at the point of care. It is in many ways merely a jumping-off point that will hopefully facilitate improved data accessibility and ease of sharing.
To improve usability and confidence in data exchange, many practices and health systems have joined together to create Regional Health Information Organizations and provide some governance structure to the process of data exchange. We strongly recommend getting involved in such an organization and engaging in the process of standardization. Regardless of your position on the usefulness or practicality of sharing patient records, a few notions are indisputable: Interoperability is coming, and point-of-care data availability – if accurate, secure, and useful – can ultimately usher in the promise of better patient care.
Information should be secure
In the process of seeking easier data exchange, we cannot lose sight of the importance of data security. Health care entities need to feel confident the information they are sending electronically will stay private until it reaches its ultimate destination. An attempt to address this issue led to the development of the “direct” encryption standard in 2010. Also known as Direct Exchange and Direct Secure Messaging, it specifies a secure method for the exchange of Protected Health Information. Providers can take advantage of the security offered through Direct by developing their own infrastructure or engaging the services of a Health Information Service Provider. These are private, HIPAA-compliant data exchange services that serve a health care community and facilitate direct messaging between health care settings. Ultimately, the goal is to create a robust Nationwide Health Information Network and achieve true widespread health information exchange. But before we actually achieve this, there is one more element essential to interoperability and improving patient care.
The information should be useful
In the preliminary stages of EHR interoperability, attempts at meaningful information exchange have led to only modest success. Outside of private health systems that have developed their own proprietary interfaces, data extraction and sharing between disparate electronic platforms have yet to have a meaningful impact on patient care. In part, this is because the information is not provided to clinicians in a useful format. Even the CCD described above is often confusing and replete with extraneous information – filtering through it during a patient encounter can be tedious and frustrating. Also, ensuring data integrity can be a real challenge, not only technically, but also practically. Questions occur regularly, such as “Did the data come through in the correct fields?” or “Did the medical resident remember to include all of the medications or allergies associated with the patient?” Ultimately, physicians need to decide whether or not to trust the information they receive before making it a permanent part of a patient’s health record.
Dr. Notte is a family physician and clinical informaticist for Abington (Pa.) Memorial Hospital. He is a partner in EHR Practice Consultants, a firm that aids physicians in adopting electronic health records. Dr. Skolnik is associate director of the family medicine residency program at Abington Memorial Hospital and professor of family and community medicine at Temple University in Philadelphia.
Contraception for adolescents
Approximately 750,000 adolescents become pregnant each year in the United States and nearly half of high school students report having had sexual intercourse. More than 80% of teenage pregnancies are unplanned and result in substantial health care costs, reduced earning potential, and increased health risks to both the mother and newborn. The American Academy of Pediatrics has released an updated policy statement that endorses long-acting reversible contraception (LARC) as a first-line consideration for adolescent contraception.
Sexual history taking and counseling
The American Academy of Pediatrics (AAP) encourages the 5 P’s of sexual history taking: partners, prevention of pregnancy, protection from sexually transmitted infections (STIs), sexual practices, past history of STIs, and pregnancy. Confidentiality is advised for issues revolving around sexuality and sexually transmitted infections. Most states have legislation regarding minor consent for contraception, details of which can be found at the Guttmacher Institute. The adolescent should be encouraged to delay onset of sexual activity until they are ready, but abstinence should not be the only focus of contraception counseling, and adolescents should be supported in choosing, and adhering to, a method of contraception if they choose to be sexually active.
Methods of contraception
The updated AAP policy statement advises that physicians offer methods of contraception by discussing methods that are more effective preventing pregnancy as preferred over methods that are less effective. The effectiveness of all contraceptive methods is described by typical user rates and average user rates, expressed as the percent of women who become pregnant using the method for 1 year. The gap between perfect and typical user rates is explained by the amount of effort that is needed to reliably use the method. Typical user rates should guide decisions about contraceptive efficacy for adolescents. Long-acting reversible contraception (LARC), specifically implants and intrauterine devices, are the most effective methods and should be encouraged for adolescents who desire birth control.
Progestin implants: Implanon and Nexplanon (Merck) are both implants containing the active metabolite of desogestrel, a progestin. Failure rates are less than 1% for the 3-year duration of the implant. Unpredictable bleeding or spotting is common, but implants are ideal for patients who desire an extended length of pregnancy prevention, without any schedule of adherence.
IUDs: These LARCs include two levonorgestrel-releasing IUDs (Mirena, 52 mg levonorgestrel and Skyla, 13.5 mg levonorgestrel, Bayer HealthCare Pharmaceuticals) and a copper-containing IUD (ParaGard, Teva ). All remain in place for 3-10 years, depending on brand, and have less than 1% failure rates. Known to be safe for use in nulliparous adolescents and patients with a previous episode of pelvic inflammatory disease (PID), STI screening in the asymptomatic patient can be performed on the day of IUD insertion. Infection can be treated while the IUD remains in place. Contraindications to an IUD are current, symptomatic PID or current, purulent cervicitis.
Progestin-only injectable contraception: Depot medroxyprogesterone acetate (DMPA or Depo-Provera, Pfizer) is a long-acting progestin given as a single intramuscular injection every 13 weeks. DMPA has a typical use failure rate of 6% in the first year and can be initiated on the same day of the visit if the patient is not pregnant. Bone density reduction seems to recover once DMPA is discontinued and bone density does not need to be measured repeatedly. However, individual risk for osteoporosis must be assessed, and all patients need to be counseled on adequate calcium and vitamin D intake.
Combined oral contraceptives (COCs): COCs all contain an estrogen and a progestin. A follow-up visit is advised in 1-3 months after starting COCs, and no gynecologic examination is necessary prior to COC use. COC can be started on the same day as the office visit in nonpregnant adolescents. The typical use failure rates are 9%, and adolescents should be educated on what to do when pills are missed. A serious adverse event associated with COC is up to 4/10,000 risk of thromboembolism, but the risk is up to 20/10,000 during pregnancy. Rifampin and antiviral and antiepileptic medications can decrease efficacy. Contraindications to COCs should be reviewed prior to prescribing.
Contraceptive vaginal ring: The vaginal ring (NuvaRing, Merck) has similar efficacy and side effects as the COCs, since it releases a combination of estrogen and progestin. Inserted and left in place for 3 weeks, it is then removed for 1 week to induce withdrawal bleeding.
Transdermal contraceptive patch: The patch has similar a similar profile as COCs and the vaginal ring. It is placed on the upper arm, torso, or abdomen, left in place for 3 weeks, and removed for 1 week. Users have estrogen exposure of 1.6 times that of COC users, so there is a potential for increased thromboembolism with patch use. Obese patients have a higher risk of pregnancy with perfect use.
Progestin-only pills: Progestin only pills work by thickening cervical mucus. Failure rates are elevated, due to the need for strict, timed dosing schedule. They provide an option for the patient who has concerns with estrogen use.
Male condom use: Condoms remain a cheap, easily accessible form of contraception, used by 53% of female and 75% of male adolescents studied. With an 18% failure rate with typical use when used alone, condom use should be additional to another effective hormonal or long-acting contraceptive.
Emergency contraception: Various hormonal options can be used up to 5 days after unprotected intercourse. Plan B One-Step is a nonprescription form available for all women of childbearing potential.
Withdrawal: 57% of female adolescents report using this method. A 22% failure rate and lack of STI protection is important to relay to the patient and more effective contraception methods should be encouraged.
The Bottom Line
The IUD and implant should be considered safe, first-line contraceptive choices for adolescents. Physicians should counsel adolescent patients on all available methods of contraception in a developmentally appropriate, confidential manner that falls within the limits of state and federal law. Condoms should always be encouraged for STI protection.
Reference: Contraception for Adolescents. Pediatrics 2014;134:e1244-e56
Dr. Skolnik is associate director of the family medicine residency program at Abington Memorial Hospital and professor of family and community medicine at Temple University in Philadelphia. Dr. Roesing is an assistant director in the Family Medicine Residency Program at Abington Memorial Hospital.
Approximately 750,000 adolescents become pregnant each year in the United States and nearly half of high school students report having had sexual intercourse. More than 80% of teenage pregnancies are unplanned and result in substantial health care costs, reduced earning potential, and increased health risks to both the mother and newborn. The American Academy of Pediatrics has released an updated policy statement that endorses long-acting reversible contraception (LARC) as a first-line consideration for adolescent contraception.
Sexual history taking and counseling
The American Academy of Pediatrics (AAP) encourages the 5 P’s of sexual history taking: partners, prevention of pregnancy, protection from sexually transmitted infections (STIs), sexual practices, past history of STIs, and pregnancy. Confidentiality is advised for issues revolving around sexuality and sexually transmitted infections. Most states have legislation regarding minor consent for contraception, details of which can be found at the Guttmacher Institute. The adolescent should be encouraged to delay onset of sexual activity until they are ready, but abstinence should not be the only focus of contraception counseling, and adolescents should be supported in choosing, and adhering to, a method of contraception if they choose to be sexually active.
Methods of contraception
The updated AAP policy statement advises that physicians offer methods of contraception by discussing methods that are more effective preventing pregnancy as preferred over methods that are less effective. The effectiveness of all contraceptive methods is described by typical user rates and average user rates, expressed as the percent of women who become pregnant using the method for 1 year. The gap between perfect and typical user rates is explained by the amount of effort that is needed to reliably use the method. Typical user rates should guide decisions about contraceptive efficacy for adolescents. Long-acting reversible contraception (LARC), specifically implants and intrauterine devices, are the most effective methods and should be encouraged for adolescents who desire birth control.
Progestin implants: Implanon and Nexplanon (Merck) are both implants containing the active metabolite of desogestrel, a progestin. Failure rates are less than 1% for the 3-year duration of the implant. Unpredictable bleeding or spotting is common, but implants are ideal for patients who desire an extended length of pregnancy prevention, without any schedule of adherence.
IUDs: These LARCs include two levonorgestrel-releasing IUDs (Mirena, 52 mg levonorgestrel and Skyla, 13.5 mg levonorgestrel, Bayer HealthCare Pharmaceuticals) and a copper-containing IUD (ParaGard, Teva ). All remain in place for 3-10 years, depending on brand, and have less than 1% failure rates. Known to be safe for use in nulliparous adolescents and patients with a previous episode of pelvic inflammatory disease (PID), STI screening in the asymptomatic patient can be performed on the day of IUD insertion. Infection can be treated while the IUD remains in place. Contraindications to an IUD are current, symptomatic PID or current, purulent cervicitis.
Progestin-only injectable contraception: Depot medroxyprogesterone acetate (DMPA or Depo-Provera, Pfizer) is a long-acting progestin given as a single intramuscular injection every 13 weeks. DMPA has a typical use failure rate of 6% in the first year and can be initiated on the same day of the visit if the patient is not pregnant. Bone density reduction seems to recover once DMPA is discontinued and bone density does not need to be measured repeatedly. However, individual risk for osteoporosis must be assessed, and all patients need to be counseled on adequate calcium and vitamin D intake.
Combined oral contraceptives (COCs): COCs all contain an estrogen and a progestin. A follow-up visit is advised in 1-3 months after starting COCs, and no gynecologic examination is necessary prior to COC use. COC can be started on the same day as the office visit in nonpregnant adolescents. The typical use failure rates are 9%, and adolescents should be educated on what to do when pills are missed. A serious adverse event associated with COC is up to 4/10,000 risk of thromboembolism, but the risk is up to 20/10,000 during pregnancy. Rifampin and antiviral and antiepileptic medications can decrease efficacy. Contraindications to COCs should be reviewed prior to prescribing.
Contraceptive vaginal ring: The vaginal ring (NuvaRing, Merck) has similar efficacy and side effects as the COCs, since it releases a combination of estrogen and progestin. Inserted and left in place for 3 weeks, it is then removed for 1 week to induce withdrawal bleeding.
Transdermal contraceptive patch: The patch has similar a similar profile as COCs and the vaginal ring. It is placed on the upper arm, torso, or abdomen, left in place for 3 weeks, and removed for 1 week. Users have estrogen exposure of 1.6 times that of COC users, so there is a potential for increased thromboembolism with patch use. Obese patients have a higher risk of pregnancy with perfect use.
Progestin-only pills: Progestin only pills work by thickening cervical mucus. Failure rates are elevated, due to the need for strict, timed dosing schedule. They provide an option for the patient who has concerns with estrogen use.
Male condom use: Condoms remain a cheap, easily accessible form of contraception, used by 53% of female and 75% of male adolescents studied. With an 18% failure rate with typical use when used alone, condom use should be additional to another effective hormonal or long-acting contraceptive.
Emergency contraception: Various hormonal options can be used up to 5 days after unprotected intercourse. Plan B One-Step is a nonprescription form available for all women of childbearing potential.
Withdrawal: 57% of female adolescents report using this method. A 22% failure rate and lack of STI protection is important to relay to the patient and more effective contraception methods should be encouraged.
The Bottom Line
The IUD and implant should be considered safe, first-line contraceptive choices for adolescents. Physicians should counsel adolescent patients on all available methods of contraception in a developmentally appropriate, confidential manner that falls within the limits of state and federal law. Condoms should always be encouraged for STI protection.
Reference: Contraception for Adolescents. Pediatrics 2014;134:e1244-e56
Dr. Skolnik is associate director of the family medicine residency program at Abington Memorial Hospital and professor of family and community medicine at Temple University in Philadelphia. Dr. Roesing is an assistant director in the Family Medicine Residency Program at Abington Memorial Hospital.
Approximately 750,000 adolescents become pregnant each year in the United States and nearly half of high school students report having had sexual intercourse. More than 80% of teenage pregnancies are unplanned and result in substantial health care costs, reduced earning potential, and increased health risks to both the mother and newborn. The American Academy of Pediatrics has released an updated policy statement that endorses long-acting reversible contraception (LARC) as a first-line consideration for adolescent contraception.
Sexual history taking and counseling
The American Academy of Pediatrics (AAP) encourages the 5 P’s of sexual history taking: partners, prevention of pregnancy, protection from sexually transmitted infections (STIs), sexual practices, past history of STIs, and pregnancy. Confidentiality is advised for issues revolving around sexuality and sexually transmitted infections. Most states have legislation regarding minor consent for contraception, details of which can be found at the Guttmacher Institute. The adolescent should be encouraged to delay onset of sexual activity until they are ready, but abstinence should not be the only focus of contraception counseling, and adolescents should be supported in choosing, and adhering to, a method of contraception if they choose to be sexually active.
Methods of contraception
The updated AAP policy statement advises that physicians offer methods of contraception by discussing methods that are more effective preventing pregnancy as preferred over methods that are less effective. The effectiveness of all contraceptive methods is described by typical user rates and average user rates, expressed as the percent of women who become pregnant using the method for 1 year. The gap between perfect and typical user rates is explained by the amount of effort that is needed to reliably use the method. Typical user rates should guide decisions about contraceptive efficacy for adolescents. Long-acting reversible contraception (LARC), specifically implants and intrauterine devices, are the most effective methods and should be encouraged for adolescents who desire birth control.
Progestin implants: Implanon and Nexplanon (Merck) are both implants containing the active metabolite of desogestrel, a progestin. Failure rates are less than 1% for the 3-year duration of the implant. Unpredictable bleeding or spotting is common, but implants are ideal for patients who desire an extended length of pregnancy prevention, without any schedule of adherence.
IUDs: These LARCs include two levonorgestrel-releasing IUDs (Mirena, 52 mg levonorgestrel and Skyla, 13.5 mg levonorgestrel, Bayer HealthCare Pharmaceuticals) and a copper-containing IUD (ParaGard, Teva ). All remain in place for 3-10 years, depending on brand, and have less than 1% failure rates. Known to be safe for use in nulliparous adolescents and patients with a previous episode of pelvic inflammatory disease (PID), STI screening in the asymptomatic patient can be performed on the day of IUD insertion. Infection can be treated while the IUD remains in place. Contraindications to an IUD are current, symptomatic PID or current, purulent cervicitis.
Progestin-only injectable contraception: Depot medroxyprogesterone acetate (DMPA or Depo-Provera, Pfizer) is a long-acting progestin given as a single intramuscular injection every 13 weeks. DMPA has a typical use failure rate of 6% in the first year and can be initiated on the same day of the visit if the patient is not pregnant. Bone density reduction seems to recover once DMPA is discontinued and bone density does not need to be measured repeatedly. However, individual risk for osteoporosis must be assessed, and all patients need to be counseled on adequate calcium and vitamin D intake.
Combined oral contraceptives (COCs): COCs all contain an estrogen and a progestin. A follow-up visit is advised in 1-3 months after starting COCs, and no gynecologic examination is necessary prior to COC use. COC can be started on the same day as the office visit in nonpregnant adolescents. The typical use failure rates are 9%, and adolescents should be educated on what to do when pills are missed. A serious adverse event associated with COC is up to 4/10,000 risk of thromboembolism, but the risk is up to 20/10,000 during pregnancy. Rifampin and antiviral and antiepileptic medications can decrease efficacy. Contraindications to COCs should be reviewed prior to prescribing.
Contraceptive vaginal ring: The vaginal ring (NuvaRing, Merck) has similar efficacy and side effects as the COCs, since it releases a combination of estrogen and progestin. Inserted and left in place for 3 weeks, it is then removed for 1 week to induce withdrawal bleeding.
Transdermal contraceptive patch: The patch has similar a similar profile as COCs and the vaginal ring. It is placed on the upper arm, torso, or abdomen, left in place for 3 weeks, and removed for 1 week. Users have estrogen exposure of 1.6 times that of COC users, so there is a potential for increased thromboembolism with patch use. Obese patients have a higher risk of pregnancy with perfect use.
Progestin-only pills: Progestin only pills work by thickening cervical mucus. Failure rates are elevated, due to the need for strict, timed dosing schedule. They provide an option for the patient who has concerns with estrogen use.
Male condom use: Condoms remain a cheap, easily accessible form of contraception, used by 53% of female and 75% of male adolescents studied. With an 18% failure rate with typical use when used alone, condom use should be additional to another effective hormonal or long-acting contraceptive.
Emergency contraception: Various hormonal options can be used up to 5 days after unprotected intercourse. Plan B One-Step is a nonprescription form available for all women of childbearing potential.
Withdrawal: 57% of female adolescents report using this method. A 22% failure rate and lack of STI protection is important to relay to the patient and more effective contraception methods should be encouraged.
The Bottom Line
The IUD and implant should be considered safe, first-line contraceptive choices for adolescents. Physicians should counsel adolescent patients on all available methods of contraception in a developmentally appropriate, confidential manner that falls within the limits of state and federal law. Condoms should always be encouraged for STI protection.
Reference: Contraception for Adolescents. Pediatrics 2014;134:e1244-e56
Dr. Skolnik is associate director of the family medicine residency program at Abington Memorial Hospital and professor of family and community medicine at Temple University in Philadelphia. Dr. Roesing is an assistant director in the Family Medicine Residency Program at Abington Memorial Hospital.