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Adolescence is a time of many changes. It is a time of growing independence, physical and emotional change, accompanied by social insecurity. Girls tend to enter puberty ahead of their male peers, growing and changing physically. Our culture tells adolescents that they are still immature, but their bodies are saying otherwise. The adolescents are also becoming aware of themselves as individuals, separate from their parents, and are presented with the challenges of independent thinking and action. If, in the midst of all of these changes, an adolescent is given the diagnosis of a chronic disease such as epilepsy, there is an additional burden. Often the adolescent must go through a variety of emotions, including shame, denial, anger, and sadness. Our role as medical providers is to provide some perspective to the illness and help guide our adolescent patient through the tumultuous emotions of grieving and acceptance. We must provide a foundation of assistance and emotional support, as well as medical knowledge. With a firm but compassionate hand, we can help them cope with their disorder. In this chapter, Drs. Haut and Zupanc explore some of the unique considerations in adolescent women with epilepsy. The first part of the chapter deals with the epidemiologic diagnosis of epilepsy in adolescence, the effect of epilepsy on reproductive health, hormonal influences on epilepsy (including catamenial seizures), and the effects of antiepileptic drugs (AEDs) on hormones, contraception, and bone health. In the second part of the chapter, we deal with the very real psychosocial issues and comorbidities of epilepsy, including quality of life, school performance, depression, migraine headaches, social stigma, and lifestyle changes. In the final section, the authors suggest strategies for clinical patient management.
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PMID:Epilepsy in women: special considerations for adolescents. 1892 77

Psychiatric disorders can be identified in 25-50% of patients with epilepsy, with higher prevalence among patients with poorly controlled seizures. These disturbances include depression, anxiety, psychotic disorders, cognitive, and personality changes occurring in the interictal or ictal/postictal states. In this chapter, we describe four areas of focus in women with epilepsy: comorbid primary psychiatric processes, integrated symptoms secondary to epilepsy, stigma and psychosocial consequences of epilepsy, and nonepileptic seizures.
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PMID:Psychiatric comorbidities in epilepsy. 1892 92

Epilepsy directly affects 50 million people worldwide. Most can achieve excellent seizure control; however, people living with epilepsy continue to suffer from enacted or perceived stigma that is based on myths, misconceptions and misunderstandings that have persisted for thousands of years. This paper reviews the frequency and nature of stigma toward epilepsy. Significant negative attitudes prevail in the adolescent and adult public worldwide leading to loneliness and social avoidance both in school and in the workplace. People with epilepsy are often wrongly viewed as having mental health and antisocial issues and as being potentially violent toward others. Twenty-five percent of adults having epilepsy describe social stigma as a result of their epilepsy. They fear rejection and often feel shame or loneliness from this diagnosis. The psychosocial and social impact of epilepsy is significant. Yet few specific interventions have been demonstrated to alter this perception. The effect on public education is primarily short-term, while change over the long-term in attitudes and inaccurate beliefs have not presently been proven effective. School education programming demonstrates improved knowledge and attitude a month after a classroom intervention, but persisting change over a longer period of time has not been evaluated. In-depth adult psycho-educational programs for adults with epilepsy improves knowledge, coping skills and level of felt stigma. However these gains have not demonstrated persistence over time. Myths, misconceptions and misunderstandings about epilepsy continue and programs aimed at increasing knowledge and reducing negative public attitudes should be enhanced.
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PMID:Stigma of epilepsy. 1897 55

Neuropsychologists are in a unique position to be active advocates for patients with epilepsy given their unique understanding of the behavioral and cognitive effects associated the disease, its progression, and its treatment. Neuropsychologists communicate the cognitive and behavioral consequences of epilepsy and its long-term implications to patients, family, school, and employers. In this article we review factors influencing the neuropsychological profile of patients with epilepsy, and discuss common behavioral comorbidities, as well as special issues associated with school placement and long-term planning. We also include a seizure action plan, which is designed to be both an educational tool for individuals with limited epilepsy knowledge, and a way to minimize stigma associated with an event should a seizure occur during school or work.
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PMID:Neuropsychological advocacy and epilepsy. 1921 28

Depression is the most frequently diagnosed psychiatric disorder among people with epilepsy. A variety of risk factors for depression among people with epilepsy have been identified; however, few studies have examined these risk factors over time. The primary purpose of this study was to explore the relationship between demographic characteristics, seizure-related factors, and psychosocial factors and depressive symptoms over 6 months. Three hundred and nineteen adults with epilepsy completed three surveys at 3-month intervals. Multiple linear regression was used with the baseline variables to predict depressive symptoms at baseline, 3 months, and 6 months. Employment status, social support, and stigma emerged as predictors of depressive symptoms at all three time points. Other factors that predicted depression symptoms in one or two time points were self-management, financial strain, and activity restriction due to seizures. The results indicate that multiple factors influence depressive symptoms among people with epilepsy.
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PMID:Individual, seizure-related, and psychosocial predictors of depressive symptoms among people with epilepsy over six months. 1930 57

One-quarter of the 40 million individuals estimated to have epilepsy in the developing world live in Africa. Data on epilepsy in Nigeria are scanty. The disease is associated with significant socioeconomic effects. This study reviewed the pattern of presentation of epilepsy in Enugu, southeast Nigeria. A retrospective study was performed of adult epilepsy patients who presented to the medical clinic at the University of Nigeria Teaching Hospital, Enugu, from January 2002 to December 2006. Case records were reviewed and data were extracted using a pro forma and analysed. A total of 207 patients were studied (113 males and 94 females). Most affected were those aged 15-34 years. Approximately 22% had childhood seizures and approximately 88% had generalised convulsive seizures. Electroencephalography was not performed in 85% of cases. Alcohol use and head injury were seizure risks in 12% and 20% of patients, respectively. More than 25% reported socioeconomic effects, including stigmatisation and job loss. Monotherapy was used in 89% of patients, with 71% having good control. Epilepsy is a considerable source of stigma and misery for sufferers in Nigeria. There is a need for greater public health education as well as training and re-training of specialists in its management.
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PMID:Pattern and presentation of epilepsy in Nigerian Africans: a study of trends in the southeast. 1946 87

Epilepsy affects approximately 0.5-1% of youth, and challenges for them and their families reach far beyond seizures. Quantitative studies have shown that in addition to increased risk for psychosocial difficulties, many experience stigma and barriers to services and resources. As a complement to quantitative analyses, qualitative research further provides unique insight into understanding the impact of epilepsy on youth and families. In the present study, focus groups were held to discuss families' experiences with epilepsy and access to related services. Qualitative analysis revealed three themes highlighting medical, educational, and social challenges of youth with epilepsy. Implications include recommendations for improvements in public awareness and public policy change.
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PMID:Impact of pediatric epilepsy: voices from a focus group and implications for public policy change. 1964 30

Living Well with Epilepsy II called for further attention to stigma and its impact on people with epilepsy. In response, the South Carolina Health Outcomes Project on Epilepsy (SC HOPE) is examining the relationship between socioeconomic status, epilepsy severity, health care utilization, and quality of life in persons diagnosed with epilepsy. The current analysis quantifies perceived stigma reported by adults with epilepsy in relation to demographic, seizure-related, health, and psychosocial factors. It was found that reported levels of stigma were associated with interactions of seizure worry and employment status, self-efficacy and social support, and quality care and age at seizure onset. This information may be used to target and develop evidence-based interventions for adults with epilepsy at high risk for perceived stigma, as well as to inform epilepsy research in self-management.
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PMID:Psychosocial factors associated with stigma in adults with epilepsy. 1978 5

This article reviews evidence of quality of life (QOL) determinants in people affected by epilepsy, including detractors and promoters. Emerging factors of particular significance for QOL are highlighted, including seizure frequency, medication side effects, psychological comorbidity, and stigma and discrimination. This article also examines the role of resilience, interpreted in its widest sense, for promoting good QOL, even in the presence of poorly controlled seizures. The importance of addressing both clinical and wider psychosocial issues is highlighted and some possible directions for future research into QOL in epilepsy are suggested.
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PMID:Determinants of quality of life in people with epilepsy. 1985 12

We assessed beliefs about epilepsy and brain surgery and the use of alternative epilepsy treatments in a culturally diverse population of people with epilepsy (PWE). Data were obtained from a structured questionnaire administered to 109 PWE treated at a single epilepsy center. Patients were born in 17 countries on five continents. Most patients identified culturally with the Caribbean (41%), United States (39%), or Latin America (9%). Sixty-nine percent of patients endorsed at least one of five stigma-related questions, and 77% used at least one alternative epilepsy treatment. Brain surgery was rated as having a mean dangerousness of 8.3 (on a scale of 1 to 10) among the 94 patients with no history of neurosurgery. In addition, 51% of these patients would not consider surgical treatment even if it were guaranteed to stop their seizures without causing deficits. Educational efforts aimed at reducing both the stigma associated with epilepsy and the fear of resective epilepsy surgery are needed.
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PMID:Patient beliefs about epilepsy and brain surgery in a multicultural urban population. 1991 Feb 61


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