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Achieving Best Care for Women with Epilepsy
Epilepsy & Behavior 1, 299 –300 (2000) doi:10.1006/ebeh.2000.0099, available online at http://www.idealibrary.com on
EDITORIAL Achieving Best Care for Women with Epilepsy Martha J. Morrell, M.D. The Neuropsychological Institute, 710 West 168th Street, Box 37, New York, New York 10032 Received August 14, 2000; revised August 15, 2000; accepted August 15, 2000
Healthcare professionals and the public at large have a growing concern about gender differences in disease and response to treatment. At the same time, there is a dearth of basic and clinical information to guide professionals in genderbased medical practice. These issues are especially important in epilepsy, because women with epilepsy face some special challenges. Yet, even where practice parameters do exist, women with epilepsy may still not be receiving appropriate counseling or optimal care. The results of a descriptive survey initiated by the Epilepsy Foundation’s Professional Advisory Board suggest that healthcare providers likely to encounter women with epilepsy lack sufficient awareness or knowledge about relevant issues. The study, a survey of 3500 healthcare providers, was conducted by the Foundation in 1998 with the assistance of the Schaefer Center for Public Policy at the University of Baltimore. It sought to assess how care practices conform to parameters recently issued by the American Academy of Neurology (1) and the American College of Obstetricians and Gynecologists (2). The survey, to appear in the Journal of Women’s Health & Gender-Based Medicine, consisted of 15 knowledge-based, multiple-choice questions on topics germane to the health of women with epilepsy: hormonal effects on seizures; reproductive disorders; interactions between antiepileptic drugs (AEDS) and oral contraceptives; pregnancy risks and teratogenicity of AEDs; sexual functioning; and risk for osteoporosis (3). The majority of respondents demonstrated a low level of specific knowledge and a high level of uncertainty about the relevant issues. A disconcerting 40% or more answered they were “unsure” to two-thirds (11 of 15) of the survey questions. Only 5% of respondents answered two-thirds or more questions correctly. As might be expected, providers seeing the largest number of persons with epilepsy demonstrated the highest level of knowledge. A large number of healthcare providers from a cross section of relevant disciplines responded to the survey by mail (n ⫽ 2663), by visiting the Foundation’s exhibit during clinical meetings (n ⫽ 766), and through the Foundation’s web site (n ⫽ 106). Identified medical specialties were family practice (47%); obstetrics and gynecology (17%); women’s health (7%); internal medicine (5%); pediatrics (4%); reproductive health (3%); gerontology (3%); neurology (2%); and endo1525-5050/00 $35.00 Copyright © 2000 by Academic Press All rights of reproduction in any form reserved.
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crinology and epileptology (1% each). Physicians/clinicians constituted 58% of respondents; 10% were nurse practitioners; and 19% were registered nurses. The survey data confirm anecdotal reports received by the Epilepsy Foundation from women who worry that they are not receiving adequate information and care from their physicians. For example, the Foundation’s affiliates in Rochester, New York, and Phoenix, Arizona, recently held seminars for women with epilepsy that included bone density screening. Many of these women were understandably dismayed to find they were at high risk for osteoporosis. They were unaware of an increased risk of bone loss among women with the disorder. So were 44% of healthcare providers who responded to the survey. Women with epilepsy commonly receive conflicting advice about pregnancy and pregnancy outcomes. Not surprisingly, half of the survey respondents answered they were “unsure” of the frequency of major birth defects in children born to women with seizure disorders. Of the remaining 50% of respondents, only 17% correctly identified the risk as double that in the general population, or 4 to 6%. Other surveys that have assessed healthcare providers’ knowledge of epilepsy and women’s health on a range of topics have had similar findings (4, 5). The ultimate value of practice parameters is to improve patient care and to identify areas ripe for research (6). Yet, the degree of implementation and ultimate effect of optimal care practices such as those issued by the American Academy of Neurology and the American College of Obstetricians and Gynecologists are currently unclear. What does seem clear is the need for active dissemination of available best care information to providers in the relevant specialties. If there is room for optimism in the Foundation’s survey, it lies in the respondents’ declared interest in learning more about issues affecting women with epilepsy. More than 50% of survey participants asked for additional information on these issues. When asked about preferred formats for continuing education, a clear majority of respondents, 69%, opted for seminars. With these survey data now in hand, the Epilepsy Foundation and its Professional Advisory Board will look into ways in which information about optimal care of women with epilepsy can be made more widely available to those who provide their care.
REFERENCES 1. 2. 3.
4. 5. 6.
Quality Standards Subcommittee of the American Academy of Neurology. Practice parameter: management issues for women with epilepsy (summary statement). Neurology 1998;51:944 – 8. Seizure disorders in pregnancy. Am Coll Obstet Gynecol Educ Bull 1996;231:1–13. Morrell M, Sarto G, Shafer P, et al. Health issues for women with epilepsy: a descriptive survey to assess knowledge and awareness among health care providers. J Womens Health Gend Based Med, in press. Krauss GL, Brandt J, Campbell M, et al. Antiepileptic medication and oral contraceptive interactions: a national survey of neurologists and obstetricians. Neurology 1996;46:1534 –9. Seale CG, Morrell MJ, Nelson L, et al. Analysis of prenatal and gestational care given to women with epilepsy. Neurology 1998;51:1039 – 45. Zahn C. Women with epilepsy: defining best practice. Epilepsy Q, Spring 2000.
Copyright © 2000 by Academic Press All rights of reproduction in any form reserved.
EDITORIAL Achieving Best Care for Women with Epilepsy Martha J. Morrell, M.D. The Neuropsychological Institute, 710 West 168th Street, Box 37, New York, New York 10032 Received August 14, 2000; revised August 15, 2000; accepted August 15, 2000
Healthcare professionals and the public at large have a growing concern about gender differences in disease and response to treatment. At the same time, there is a dearth of basic and clinical information to guide professionals in genderbased medical practice. These issues are especially important in epilepsy, because women with epilepsy face some special challenges. Yet, even where practice parameters do exist, women with epilepsy may still not be receiving appropriate counseling or optimal care. The results of a descriptive survey initiated by the Epilepsy Foundation’s Professional Advisory Board suggest that healthcare providers likely to encounter women with epilepsy lack sufficient awareness or knowledge about relevant issues. The study, a survey of 3500 healthcare providers, was conducted by the Foundation in 1998 with the assistance of the Schaefer Center for Public Policy at the University of Baltimore. It sought to assess how care practices conform to parameters recently issued by the American Academy of Neurology (1) and the American College of Obstetricians and Gynecologists (2). The survey, to appear in the Journal of Women’s Health & Gender-Based Medicine, consisted of 15 knowledge-based, multiple-choice questions on topics germane to the health of women with epilepsy: hormonal effects on seizures; reproductive disorders; interactions between antiepileptic drugs (AEDS) and oral contraceptives; pregnancy risks and teratogenicity of AEDs; sexual functioning; and risk for osteoporosis (3). The majority of respondents demonstrated a low level of specific knowledge and a high level of uncertainty about the relevant issues. A disconcerting 40% or more answered they were “unsure” to two-thirds (11 of 15) of the survey questions. Only 5% of respondents answered two-thirds or more questions correctly. As might be expected, providers seeing the largest number of persons with epilepsy demonstrated the highest level of knowledge. A large number of healthcare providers from a cross section of relevant disciplines responded to the survey by mail (n ⫽ 2663), by visiting the Foundation’s exhibit during clinical meetings (n ⫽ 766), and through the Foundation’s web site (n ⫽ 106). Identified medical specialties were family practice (47%); obstetrics and gynecology (17%); women’s health (7%); internal medicine (5%); pediatrics (4%); reproductive health (3%); gerontology (3%); neurology (2%); and endo1525-5050/00 $35.00 Copyright © 2000 by Academic Press All rights of reproduction in any form reserved.
299
300
Editorial
crinology and epileptology (1% each). Physicians/clinicians constituted 58% of respondents; 10% were nurse practitioners; and 19% were registered nurses. The survey data confirm anecdotal reports received by the Epilepsy Foundation from women who worry that they are not receiving adequate information and care from their physicians. For example, the Foundation’s affiliates in Rochester, New York, and Phoenix, Arizona, recently held seminars for women with epilepsy that included bone density screening. Many of these women were understandably dismayed to find they were at high risk for osteoporosis. They were unaware of an increased risk of bone loss among women with the disorder. So were 44% of healthcare providers who responded to the survey. Women with epilepsy commonly receive conflicting advice about pregnancy and pregnancy outcomes. Not surprisingly, half of the survey respondents answered they were “unsure” of the frequency of major birth defects in children born to women with seizure disorders. Of the remaining 50% of respondents, only 17% correctly identified the risk as double that in the general population, or 4 to 6%. Other surveys that have assessed healthcare providers’ knowledge of epilepsy and women’s health on a range of topics have had similar findings (4, 5). The ultimate value of practice parameters is to improve patient care and to identify areas ripe for research (6). Yet, the degree of implementation and ultimate effect of optimal care practices such as those issued by the American Academy of Neurology and the American College of Obstetricians and Gynecologists are currently unclear. What does seem clear is the need for active dissemination of available best care information to providers in the relevant specialties. If there is room for optimism in the Foundation’s survey, it lies in the respondents’ declared interest in learning more about issues affecting women with epilepsy. More than 50% of survey participants asked for additional information on these issues. When asked about preferred formats for continuing education, a clear majority of respondents, 69%, opted for seminars. With these survey data now in hand, the Epilepsy Foundation and its Professional Advisory Board will look into ways in which information about optimal care of women with epilepsy can be made more widely available to those who provide their care.
REFERENCES 1. 2. 3.
4. 5. 6.
Quality Standards Subcommittee of the American Academy of Neurology. Practice parameter: management issues for women with epilepsy (summary statement). Neurology 1998;51:944 – 8. Seizure disorders in pregnancy. Am Coll Obstet Gynecol Educ Bull 1996;231:1–13. Morrell M, Sarto G, Shafer P, et al. Health issues for women with epilepsy: a descriptive survey to assess knowledge and awareness among health care providers. J Womens Health Gend Based Med, in press. Krauss GL, Brandt J, Campbell M, et al. Antiepileptic medication and oral contraceptive interactions: a national survey of neurologists and obstetricians. Neurology 1996;46:1534 –9. Seale CG, Morrell MJ, Nelson L, et al. Analysis of prenatal and gestational care given to women with epilepsy. Neurology 1998;51:1039 – 45. Zahn C. Women with epilepsy: defining best practice. Epilepsy Q, Spring 2000.
Copyright © 2000 by Academic Press All rights of reproduction in any form reserved.