Abstracts

Rationale: The 2003 Living Well with Epilepsy II Conference yielded recommendations regarding the development of self-management programs for people with epilepsy. The University of Washington is 1 of 5 sites in the Centers for Disease Control-funded Managing Epilepsy Well network initiating research in this area. A paucity of consumer needs assessment data in epilepsy self-management programming lead the aim to involve consumers in program development versus rely solely upon professional judgment. Methods: Literature review was used to create a consumer needs survey. Next, 2 focus groups were held with adults with epilepsy (n = 20) to validate contents. Qualitative responses were recorded and used to refine survey items, which included demographic, physical and mental health, and intervention format items, as well as a problem rating scale. A total of 270 surveys were mailed to adult outpatients from Epilepsy Foundation Northwest support groups (n =20), Swedish Hospital Epilepsy Center (n =125), and UW Regional Epilepsy Center (n =125). Results: A total of 165 (61%) surveys were collected. Respondents were a mean age of 41 years; 43.6% male; and a mean age of 22.6 years at the time of epilepsy diagnosis. Over 40% reported a history of depression treatment. Over 30% were employed full-time; 39.8% were underemployed; 23.3% received disability income due to a seizure condition. Multivariate linear regression was used to identify predictors of life adjustment (perceived health, happiness, and life satisfaction). For all 3 outcomes the Personal Health Questionnaire-9 (PHQ-9) depression score was the best predictor (Table 1). For happiness and life satisfaction, the PHQ-9 out-performed all other variables such that none of them improved the predictive power of the model. However, by replacing the PHQ-9 score with a dichotomous measure of major depression, additional variables contributed to the predictive power of the multivariate model. Specifically, major depression, anxiety, and cognitive problems predicted happiness. Income, major depression, anxiety, and cognitive problems predicted life satisfaction (Table 2). Secondary analyses compared problem ratings of respondents with depression or cognitive problems to respondents without these concerns. The impaired respondents were less likely to be employed and reported significantly greater difficulty with independent living, work, socializing, epilepsy management, health and well-being, and medical care. Regarding intervention format, respondents prefer in-person individual or group sessions that meet for 1 hour on a weeknight and are lead by a physician or a professional plus lay person with epilepsy. Conclusions: Health and well-being are influenced by depression and cognitive problems. These issues seem to influence the perceived problems of adults with epilepsy. The concerns of consumers need to be carefully considered in the development of epilepsy self-management programs. The needs of those with higher levels of depression and cognitive concerns deserve unique consideration as these adults are more likely to have difficulty with adherence to medical regimen and life adjustment.