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

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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  • The initial diagnosis of epilepsy can cause adjustment disorders, refractory epilepsy can challenge coping resources, and epilepsy can give rise to specific anxieties about seizures, which may cause significant restrictions of patients' independence and social functioning.

    “The initial diagnosis of epilepsy can cause adjustment disorders, refractory epilepsy can challenge coping resources, and epilepsy can give rise to specific anxieties about seizures, which may cause significant restrictions of patients' independence and social functioning [2-4].”

    From A prospective service evaluation of acceptance and commitment therapy for patients with refractory epilepsy (2015) · cites this paper as [2]

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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
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 › Psychiatry and Mental health › Epilepsy research and treatment
  • Health Sciences › Medicine › Pediatrics, Perinatology and Child Health › Pharmacological Effects and Toxicity Studies
  • Social Sciences › Psychology › Social Psychology › 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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