The impact of epilepsy from the patient's perspective I. Descriptions and subjective perceptions

This study surveyed the perceptions about and subjective experience of 1023 people with epilepsy in two community-based samples: one from a national p ostal survey; the other callers to the Epilepsy Foundation. Response to a m ail survey was 49%. In comparison with US Census Bureau norms, respondents had received less education, were less likely to be employed or married, an d came from lower income households. Complex partial seizures were the most prevalent seizure type, but a convulsion had occurred in 61%. Fifty percen t of respondents reported incomplete control of their seizure disorder, alt hough 25% of these had a seizure in the prior year. Thirteen percent had a longest inter-seizure interval of a year or greater, 37% of 3 months, 22% o f 1 month, 10% of 1 week and 4% of 1 day. Respondents listed uncertainty an d fear of having a seizure as the worst thing about having epilepsy. Lifest yle, school, driving, and employment limits were also listed as major probl ems. When asked to rank a list of potential problems, cognitive impairment was ranked highest. These data indicate that ongoing medical and psychosoci al problems continue for those with epilepsy in the view of those questione d and their families, even in a sample where the majority report good contr ol of their epilepsy. (C) 2000 Published by Elsevier Science B.V. All right s reserved.