Cited by 438Epilepsy research and treatmentPharmacological Effects and Toxicity StudiesMental Health Treatment and Access

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

Fisher, Robert S, Vickrey, Barbara G, Gibson, Patricia, Hermann, Bruce, Penovich, Patricia, Scherer, Ann, Walker, Steven·2000·Epilepsy Research

DOI 10.1016/s0920-1211(00)00126-1

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Abstract

This study surveyed the perceptions about and subjective experience of 1023 people with epilepsy in two community-based samples: one from a national postal survey; the other callers to the Epilepsy Foundation. Response to a mail survey was 49%. In comparison with US Census Bureau norms, respondents had received less education, were less likely to be employed or married, and came from lower income households. Complex partial seizures were the most prevalent seizure type, but a convulsion had occurred in 61%. Fifty percent of respondents reported incomplete control of their seizure disorder, although 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% of 1 month, 10% of 1 week and 4% of 1 day. Respondents listed uncertainty and fear of having a seizure as the worst thing about having epilepsy. Lifestyle, school, driving, and employment limits were also listed as major problems. When asked to rank a list of potential problems, cognitive impairment was ranked highest. These data indicate that ongoing medical and psychosocial problems continue for those with epilepsy in the view of those questioned and their families, even in a sample where the majority report good control of their epilepsy.

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Authors: Fisher, R. S., Vickrey, B. G., Gibson, P., Hermann, B., Penovich, P., Scherer, A., & Walker, S.
Affiliations: Barrow Neurological Institute (US)
University of California, Los Angeles (US)
University of Wisconsin–Madison (US)
Minnesota Epilepsy Group (US)
Epilepsy Foundation (US)
Hoechst Marion Roussel (United States) (US)
Corresponding author: Fisher, Robert S
ORCID: Fisher, Robert S
Vickrey, Barbara G
Gibson, Patricia
Hermann, Bruce
Penovich, Patricia
Venue: Epilepsy Research
Publisher: Elsevier BV
Published: 2000-08
Volume: 41
Issue: 1
Pages: 39-51
ISSN: 0920-1211 (ISSN-L)
DOI: 10.1016/s0920-1211(00)00126-1
OpenAlex: W2171266607
Cited by: 438
References: 52
Citations by year: 2026: 10 · 2025: 9 · 2024: 15 · 2023: 21 · 2022: 17 · 2021: 25 · 2020: 23 · 2019: 19 · 2018: 13 · 2017: 15 · 2016: 19 · 2015: 27 · 2014: 23 · 2013: 23 · 2012: 17
FWCI: 6.51
Type: journal article
Language: en
Open access: closed
Licence: www.elsevier.com/tdm/userlicense/1.0/ (tdm)
Locations: Epilepsy Research (publishedVersion)
PubMed (publishedVersion)
Funders: Epilepsy Foundation
Topics: Health Sciences › Medicine › Clinical Neurology › Epilepsy research and treatment
Health Sciences › Medicine › Pediatrics, Perinatology and Child Health › Pharmacological Effects and Toxicity Studies
Health Sciences › Medicine › Psychiatry and Mental health › Mental Health Treatment and Access
Keywords: epilepsy, patient perspectives, subjective experience, seizure control, complex partial seizures, seizure frequency, fear of seizures, cognitive impairment, psychosocial problems
MeSH terms: Adolescent, Adult, Age Factors, Aged, Attitude to Health, Educational Status, Employment, Epilepsy, Female, Humans, Income, Male, Marriage, Middle Aged, Surveys and Questionnaires, Socioeconomic Factors, United States, Case-Control Studies, Epilepsy, Complex Partial, Databases as Topic

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

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