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Cited by 847Epilepsy research and treatmentPharmacological Effects and Toxicity StudiesMental Health Treatment and Access

Quality of life of people with epilepsy: a European study

Baker, Gus A., Jacoby, Ann, Buck, Deborah, Stalgis, Carlos, Monnet, Dominique·1997·Epilepsia
DOI 10.1111/j.1528-1157.1997.tb01128.x
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Abstract

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.

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Crossref · 10.1111/j.1528-1157.1997.tb01128.x

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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 [4]

  • Epilepsy is associated with a wide range of comorbidities and psychosocial complications that may be more disabling and detrimental to patients' quality of life than the seizures themselves.

    “Epilepsy is a complex condition. It is associated with a wide range of comorbidities, and psychosocial complications, which may be more disabling and detrimental to the patients' quality of life than the seizures itself.”

    From A prospective service evaluation of acceptance and commitment therapy for patients with refractory epilepsy (2015) · cites this paper as [4]

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Authors
Baker, G. A., Jacoby, A., Buck, D., Stalgis, C., & Monnet, D.
Affiliations
  • Walton Centre (GB)
  • Newcastle University (GB)
Corresponding author
Baker, Gus A.
ORCID
Venue
Epilepsia
Publisher
Wiley
Published
1997-03
Volume
38
Issue
3
Pages
353-362
ISSN
  • 0013-9580 (ISSN-L)
  • 1528-1167
DOI
10.1111/j.1528-1157.1997.tb01128.x
OpenAlex
W1979819746
Cited by
847
References
38
Citations by year
2026: 14 · 2025: 34 · 2024: 32 · 2023: 29 · 2022: 27 · 2021: 43 · 2020: 57 · 2019: 31 · 2018: 31 · 2017: 32 · 2016: 43 · 2015: 49 · 2014: 41 · 2013: 36 · 2012: 36
FWCI
10.08
Type
journal article
Language
en
Open access
closed
Licence
onlinelibrary.wiley.com/termsAndConditions#vor (vor, 3077 d)
Locations
  • Epilepsia (publishedVersion)
  • PubMed (publishedVersion)
  • Research Explorer (The University of Manchester) (publishedVersion)
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, quality of life, antiepileptic drugs, adverse drug reactions, seizure control, stigma, psychosocial functioning, seizure frequency, seizure types, health status, SF-36
MeSH terms
Anticonvulsants, Attitude to Health, Employment, Epilepsy, Europe, Humans, Quality of Life, Wounds and Injuries, Age of Onset, Sickness Impact Profile

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