Quality of Life of People with Epilepsy: A European Study

Epilepsia - Tập 38 Số 3 - Trang 353-362 - 1997
Gus A. Baker1, T. J. Peters2, Deborah Buck2, Carlos Stalgis3, Dominique L Monnet3
1University Department of Neurosciences, Walton Hospital, Liverpool, U.K.
2Centre for Health Services Research, University of Newcastle upon Tyne, Newcastle upon Tyne, U.K.
3Schering-Plough International, Kenilworth, New Jersey, U.S.A.

Tóm tắt

Summary: Purpose: To study the impact of epilepsy and its treatment on people with epilepsy in Europe. We therefore aimed to collect data from as many countries as possible. Methods: Clinical and demographic details and information about psychosocial functioning was collected using self‐completed questionnaires mailed to members of epilepsy support groups. Results: Quality of life data was collected from >5,000 patients living in 15 countries in Europe. Over a third of all respondents had frequent seizures, and a fifth believed that their seizures were not well enough controlled by antiepileptic medication. Reported levels of side effects from medication were high. A significant number of respondents reported changing their medication because of side effects or poor control. Respondents reported that epilepsy and its treatment had a significant impact on a number of different aspects of their daily lives. Half of all respondents felt stigmatised by their epilepsy. There were significant differences by seizure type and frequency in the way respondents scored on measures of the perceived impact of their condition, the stigma associated with it and their health status as measured by a generic scale, the SF36. Conclusions: This study confirms the findings of previous smaller‐scale studies that reducing side effects and achieving better control of seizures are key to improving the quality of life of people with epilepsy, as is reducing the stigma and handicap associated with it.

Từ khóa


Tài liệu tham khảo

10.1111/j.1528-1157.1990.tb05497.x

10.1136/bmj.304.6839.1416

10.1016/S0896-6974(05)80134-3

10.1016/S0733-8619(18)30107-5

Amtson P, 1986, Psychopathology in epilepsy: social dimensions

10.1016/0277-9536(90)90058-Z

10.1111/j.1528-1157.1983.tb04636.x

Floyd M., 1986, Epilepsy and employment‐a medical symposium on current problems and best practices

Hauser WA, 1990, Epilepsy: frequency, causes and consequences

Collings J., 1992, Epilepsy and the experience of employment. A report of a national survey by the British Epilepsy Association

10.1111/j.1528-1157.1980.tb04072.x

Lechtenberg R., 1984, Epilepsy and the family

10.1111/1467-9566.ep11346455

10.1016/0277-9536(94)90396-4

10.1111/j.1528-1157.1993.tb02126.x

Jacoby A., 1992, Epilepsy and the quality of everyday life. Findings from a study of people with well‐controlled epilepsy, Soc Sci Med, 43, 651

10.1016/0920-1211(93)90041-5

10.1111/j.1528-1157.1980.tb04091.x

Baker GA, 1994, Initial development, reliability and validity of a patient‐based adverse drug event scale [Abstract], Epilepsia, 35, 20

Ley P., 1987, Health psychology‐processes and applications

10.1016/0920-1211(93)90042-6

Hyman MD., 1971, The stigma of stroke, Geriatrics, 5, 132

10.1097/00005650-199206000-00002

10.1136/bmj.306.6890.1437

10.1007/978-1-4684-2253-5

SPSS Inc., 1993, SPSS base system user's guide for SPSS 4.0

10.1136/bmj.292.6522.746

Cartwright A., 1983, Health surveys: in practice and potential

10.1111/j.1528-1157.1996.tb00006.x

Buck D, Patients' experiences of injury as a result of epilepsy, Epilepsia

10.1111/j.1528-1157.1981.tb04327.x

10.1111/j.1528-1157.1992.tb05896.x

Straus A., 1984, Chronic illness and the quality of life

10.1097/00005650-199204000-00002

10.1111/j.1528-1157.1993.tb05915.x

OPCS., 1989, General household survey, 1987

10.1111/j.1528-1157.1972.tb04562.x

Masland RL., 1985, The epilepsies

Roper Organization., 1992, Living with epilepsy: a quality of life survey