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Chapter 23 Health Disparities in Epilepsy
HEALTH DISPARITIES IN EPILEPSY: HOW PATIENT-ORIENTED OUTCOMES IN WOMEN DIFFER FROM MEN
Frank Gilliam Department of Neurology, Columbia University Medical Center, Comprehensive Epilepsy Center, New York 10032, USA
Epilepsy is a chronic disorder with multiple effects on biological, social, and psychological health. Many of these effects differ between men and women, but only sparse research has specifically addressed the relevance and importance of the differences. Available evidence suggests that men and women with epilepsy have differing rates of employment and driving, and women with epilepsy have increased risk for specific mood disorders such as post-partum depression. National surveys of physicians indicate that many physicians providing care for women with epilepsy have limited knowledge of fundamental concerns such as interactions between antiepileptic drugs and oral contraceptives, and their potential teratogenic effects. Further research and clinical implementation of improved gender-specific care is needed to optimize outcomes for women with epilepsy. Epilepsy is a complex disorder with multiple clinical syndromes, etiologies, and potential long-term health eVects (Fisher et al., 2005). Extensive research in recent decades has enriched our understanding of the intricate hormonal, neurochemical, and environmental eVects on epileptic neurons and associated cerebral networks (Chang and Lowenstein, 2003). The development of reliable and valid instruments for the evaluation of patient-oriented outcomes has further informed our modern perspective of the eVects of epilepsy on psychological, vocational, and social functioning (Baker et al., 1997; Devinsky et al., 1995; Vickrey et al., 1994). Considering the observed gender diVerences in aspects physiological and behavior functions, it seems very appropriate to study the associations of these diVerences with specific clinical and biological aspects of epilepsy (Cramer et al., 2007; Scharfman and MacLusky, 2006). The study of relevant aspects of epilepsy in women oVers the potential to develop optimal treatment strategies, and may also yield important advances to further our understanding of the complexity of epilepsy intervention and comprehensive outcomes that could benefit both women and men (Zahn et al., 1998). INTERNATIONAL REVIEW OF NEUROBIOLOGY, VOL. 83 DOI: 10.1016/S0074-7742(08)00023-8
417
Copyright 2008, Elsevier Inc. All rights reserved. 0074-7742/08 $35.00
418
FRANK GILLIAM
Depression is an important example of the multidimensional health eVects of epilepsy in women. Although depression is significantly more prevalent in women than men in the general population, it appears to occur at similar rates in women and men with epilepsy (Mensah et al., 2006). A possible explanation of this lack of diVerence in persons with epilepsy could be due to interictal brain changes that predispose both sexes with epilepsy to depression (Gilliam et al., 2004). However, certain health states unique to women may increase the risk of depression. For example, a recent study found that postpartum depression was more than twice as frequent in women with epilepsy compared to controls (29% versus 11%; p < 0.05). Specific aspects of comorbidities unique to gender must be fully understood in order to develop successful research initiatives and develop optimal diagnostic and research strategies. Independence appears to be another important aspect of epilepsy that may be underemphasized by clinicians, although it was ranked as the second most common problem spontaneously cited by patients in a subspecialty epilepsy clinic sample (Gilliam et al., 1997). Interestingly, factors critical to independence, such as driving privileges and employment, may be diVerent between men and women in certain situations. For example, men with a childhood history of epilepsy were nearly three times (relative risk 2.7 95% CI 1.1–6.3) more likely to have a driver’s license in Finland compared to women with a similar history (Sillanpaa and Shinnar, 2005). Although single women and men were equally likely to be employed in another large cohort in the United Kingdom (78% employed), married women were much less likely to have a job than married men (55% versus 81%) ( Jacoby, 1995). Observations such as diVerences in driving privileges and employment suggest that advances are still needed in our understanding of the role of gender in epilepsy-related social and vocational disabilities. Aspects of care specific to women with epilepsy have traditionally been neglected, an outlook that is now reversing. A glaring example of the deficiency in delivery of health care to women with epilepsy is the limited knowledge of clinicians regarding the interaction between common antiepileptic drugs and oral contraceptives (Krauss et al., 1996). In a national survey 91% of responding neurologists and 75% of obstetricians reported that they provided care of women of childbearing age with epilepsy, but only 4% of neurologists and none of the obstetricians knew the eVects of the six most common antiepileptic drugs on oral contraceptives. Similarly, potential eVects of antiepileptic drugs on endogenous hormones may also impact other aspects of quality of life such as sexuality. Unfortunately, relatively little attention has been given to this issue in women with epilepsy as compared to men. The potential impact of seizures as well as commonly used medications during pregnancy is also of notable concern. Although available evidence at the time indicated that the risk of antiepileptic drug exposure during pregnancy increased birth defect rates from 4% to 6%, the risk was estimated by 44% of neurologist to be 0–3%, and some respondents thought the risk was
HEALTH DISPARITIES IN EPILEPSY: HOW PATIENT-ORIENTED OUTCOMES
419
as high as 50%. Several pregnancy registries are defining more accurately the risk of birth malformations for specific drugs, but very little clinical research has investigated the impact of this information on improved patient education and care. The past has taught us, therefore, that there are biological, psychosocial, and academic diVerences regarding gender issues in epilepsy. This volume attests to the growing body of knowledge gender-specific health care, and is intended to present up-to-date information on epilepsy care for women across age groups ranging from adolescents to late maturity.
References
Baker, G. A., Jacoby, A., Buck, D., Stalgis, C., and Monnet, D. (1997). Quality of life of people with epilepsy: A European study. Epilepsia 38, 353–362. Chang, B. S., and Lowenstein, D. H. (2003). Epilepsy. N. Engl. J. Med. 349, 1257–1266. Cramer, J. A., Gordon, J., Schachter, S., and Devinsky, O. (2007). Women with epilepsy: Hormonal issues from menarche through menopause. Epilepsy Behav. 11, 160–178. Devinsky, O., Vickrey, B. G., Cramer, J., et al. (1995). Development of the quality of life in epilepsy inventory. Epilepsia 36, 1089–1104. Fisher, R. S., Boas, W. V. E., Blume, W., et al. (2005). Epileptic seizures and epilepsy: Definitions proposed by the International League Against Epilepsy (ILAE) and the International Bureau for Epilepsy (IBE). Epilepsia 46, 470–472. Gilliam, F., Kuzniecky, R., Faught, E., Black, L., Carpenter, G., and Schrodt, R. (1997). Patientvalidated content of epilepsy-specific quality-of-life measurement. Epilepsia 38, 233–236. Gilliam, F. G., Santos, J., Vahle, V., Carter, J., Brown, K., and Hecimovic, H. (2004). Depression in epilepsy: Ignoring clinical expression of neuronal network Dysfunction? Epilepsia 45, 28–33. Jacoby, A. (1995). Impact of epilepsy on employment status: Findings from a UK study of people with well-controlled epilepsy. Epilepsy Res. 21, 125–132. Krauss, G. L., Brandt, J., Campbell, M., Plate, C., and Summerfield, M. (1996). Antiepileptic medication and oral contraceptive interactions: A national survey of neurologists and obstetricians. Neurology 46, 1534–1539. Mensah, S. A., Beavis, J. M., Thapar, A. K., and Kerr, M. (2006). The presence and clinical implications of depression in a community population of adults with epilepsy. Epilepsy Behav. 8, 213–219. Scharfman, H. E., and MacLusky, N. J. (2006). The influence of gonadal hormones on neuronal excitability, seizures, and epilepsy in the female. Epilepsia (Series 4) 47, 1423–1440. Sillanpaa, M., and Shinnar, S. (2005). Obtaining a driver’s license and seizure relapse in patients with childhood-onset epilepsy. Neurology 64, 680–686. Vickrey, B. G., Hays, R. D., Rausch, R., Sutherling, W. W., Engel, J., Jr., and Brook, R. H. (1994). Quality of life of epilepsy surgery patients as compared with outpatients with hypertension, diabetes, heart disease, and/or depressive symptoms. Epilepsia 35, 597–607. Zahn, C. A., Morrell, M. J., Collins, S. D., Labiner, D. M., and Yerby, M. S. (1998). Management issues for women with epilepsy: A review of the literature. Neurology 51, 949–956.
Frank Gilliam Department of Neurology, Columbia University Medical Center, Comprehensive Epilepsy Center, New York 10032, USA
Epilepsy is a chronic disorder with multiple effects on biological, social, and psychological health. Many of these effects differ between men and women, but only sparse research has specifically addressed the relevance and importance of the differences. Available evidence suggests that men and women with epilepsy have differing rates of employment and driving, and women with epilepsy have increased risk for specific mood disorders such as post-partum depression. National surveys of physicians indicate that many physicians providing care for women with epilepsy have limited knowledge of fundamental concerns such as interactions between antiepileptic drugs and oral contraceptives, and their potential teratogenic effects. Further research and clinical implementation of improved gender-specific care is needed to optimize outcomes for women with epilepsy. Epilepsy is a complex disorder with multiple clinical syndromes, etiologies, and potential long-term health eVects (Fisher et al., 2005). Extensive research in recent decades has enriched our understanding of the intricate hormonal, neurochemical, and environmental eVects on epileptic neurons and associated cerebral networks (Chang and Lowenstein, 2003). The development of reliable and valid instruments for the evaluation of patient-oriented outcomes has further informed our modern perspective of the eVects of epilepsy on psychological, vocational, and social functioning (Baker et al., 1997; Devinsky et al., 1995; Vickrey et al., 1994). Considering the observed gender diVerences in aspects physiological and behavior functions, it seems very appropriate to study the associations of these diVerences with specific clinical and biological aspects of epilepsy (Cramer et al., 2007; Scharfman and MacLusky, 2006). The study of relevant aspects of epilepsy in women oVers the potential to develop optimal treatment strategies, and may also yield important advances to further our understanding of the complexity of epilepsy intervention and comprehensive outcomes that could benefit both women and men (Zahn et al., 1998). INTERNATIONAL REVIEW OF NEUROBIOLOGY, VOL. 83 DOI: 10.1016/S0074-7742(08)00023-8
417
Copyright 2008, Elsevier Inc. All rights reserved. 0074-7742/08 $35.00
418
FRANK GILLIAM
Depression is an important example of the multidimensional health eVects of epilepsy in women. Although depression is significantly more prevalent in women than men in the general population, it appears to occur at similar rates in women and men with epilepsy (Mensah et al., 2006). A possible explanation of this lack of diVerence in persons with epilepsy could be due to interictal brain changes that predispose both sexes with epilepsy to depression (Gilliam et al., 2004). However, certain health states unique to women may increase the risk of depression. For example, a recent study found that postpartum depression was more than twice as frequent in women with epilepsy compared to controls (29% versus 11%; p < 0.05). Specific aspects of comorbidities unique to gender must be fully understood in order to develop successful research initiatives and develop optimal diagnostic and research strategies. Independence appears to be another important aspect of epilepsy that may be underemphasized by clinicians, although it was ranked as the second most common problem spontaneously cited by patients in a subspecialty epilepsy clinic sample (Gilliam et al., 1997). Interestingly, factors critical to independence, such as driving privileges and employment, may be diVerent between men and women in certain situations. For example, men with a childhood history of epilepsy were nearly three times (relative risk 2.7 95% CI 1.1–6.3) more likely to have a driver’s license in Finland compared to women with a similar history (Sillanpaa and Shinnar, 2005). Although single women and men were equally likely to be employed in another large cohort in the United Kingdom (78% employed), married women were much less likely to have a job than married men (55% versus 81%) ( Jacoby, 1995). Observations such as diVerences in driving privileges and employment suggest that advances are still needed in our understanding of the role of gender in epilepsy-related social and vocational disabilities. Aspects of care specific to women with epilepsy have traditionally been neglected, an outlook that is now reversing. A glaring example of the deficiency in delivery of health care to women with epilepsy is the limited knowledge of clinicians regarding the interaction between common antiepileptic drugs and oral contraceptives (Krauss et al., 1996). In a national survey 91% of responding neurologists and 75% of obstetricians reported that they provided care of women of childbearing age with epilepsy, but only 4% of neurologists and none of the obstetricians knew the eVects of the six most common antiepileptic drugs on oral contraceptives. Similarly, potential eVects of antiepileptic drugs on endogenous hormones may also impact other aspects of quality of life such as sexuality. Unfortunately, relatively little attention has been given to this issue in women with epilepsy as compared to men. The potential impact of seizures as well as commonly used medications during pregnancy is also of notable concern. Although available evidence at the time indicated that the risk of antiepileptic drug exposure during pregnancy increased birth defect rates from 4% to 6%, the risk was estimated by 44% of neurologist to be 0–3%, and some respondents thought the risk was
HEALTH DISPARITIES IN EPILEPSY: HOW PATIENT-ORIENTED OUTCOMES
419
as high as 50%. Several pregnancy registries are defining more accurately the risk of birth malformations for specific drugs, but very little clinical research has investigated the impact of this information on improved patient education and care. The past has taught us, therefore, that there are biological, psychosocial, and academic diVerences regarding gender issues in epilepsy. This volume attests to the growing body of knowledge gender-specific health care, and is intended to present up-to-date information on epilepsy care for women across age groups ranging from adolescents to late maturity.
References
Baker, G. A., Jacoby, A., Buck, D., Stalgis, C., and Monnet, D. (1997). Quality of life of people with epilepsy: A European study. Epilepsia 38, 353–362. Chang, B. S., and Lowenstein, D. H. (2003). Epilepsy. N. Engl. J. Med. 349, 1257–1266. Cramer, J. A., Gordon, J., Schachter, S., and Devinsky, O. (2007). Women with epilepsy: Hormonal issues from menarche through menopause. Epilepsy Behav. 11, 160–178. Devinsky, O., Vickrey, B. G., Cramer, J., et al. (1995). Development of the quality of life in epilepsy inventory. Epilepsia 36, 1089–1104. Fisher, R. S., Boas, W. V. E., Blume, W., et al. (2005). Epileptic seizures and epilepsy: Definitions proposed by the International League Against Epilepsy (ILAE) and the International Bureau for Epilepsy (IBE). Epilepsia 46, 470–472. Gilliam, F., Kuzniecky, R., Faught, E., Black, L., Carpenter, G., and Schrodt, R. (1997). Patientvalidated content of epilepsy-specific quality-of-life measurement. Epilepsia 38, 233–236. Gilliam, F. G., Santos, J., Vahle, V., Carter, J., Brown, K., and Hecimovic, H. (2004). Depression in epilepsy: Ignoring clinical expression of neuronal network Dysfunction? Epilepsia 45, 28–33. Jacoby, A. (1995). Impact of epilepsy on employment status: Findings from a UK study of people with well-controlled epilepsy. Epilepsy Res. 21, 125–132. Krauss, G. L., Brandt, J., Campbell, M., Plate, C., and Summerfield, M. (1996). Antiepileptic medication and oral contraceptive interactions: A national survey of neurologists and obstetricians. Neurology 46, 1534–1539. Mensah, S. A., Beavis, J. M., Thapar, A. K., and Kerr, M. (2006). The presence and clinical implications of depression in a community population of adults with epilepsy. Epilepsy Behav. 8, 213–219. Scharfman, H. E., and MacLusky, N. J. (2006). The influence of gonadal hormones on neuronal excitability, seizures, and epilepsy in the female. Epilepsia (Series 4) 47, 1423–1440. Sillanpaa, M., and Shinnar, S. (2005). Obtaining a driver’s license and seizure relapse in patients with childhood-onset epilepsy. Neurology 64, 680–686. Vickrey, B. G., Hays, R. D., Rausch, R., Sutherling, W. W., Engel, J., Jr., and Brook, R. H. (1994). Quality of life of epilepsy surgery patients as compared with outpatients with hypertension, diabetes, heart disease, and/or depressive symptoms. Epilepsia 35, 597–607. Zahn, C. A., Morrell, M. J., Collins, S. D., Labiner, D. M., and Yerby, M. S. (1998). Management issues for women with epilepsy: A review of the literature. Neurology 51, 949–956.