Quality of Life Research

, Volume 4, Issue 2, pp 115–134 | Cite as

Advances in methods for assessing the impact of epilepsy and antiepileptic drug therapy on patients' health-related quality of life

  • A. K. Wagner
  • S. D. Keller
  • M. Kosinski
  • G. A. Baker
  • A. Jacoby
  • M. -A. Hsu
  • D. W. Chadwick
  • J. E. WareJr


We studied 31 previously validated and newly developed generic and epilepsy-specific scales to evaluate their usefulness for assessing the impact of epilepsy and anti-epileptic drug (AED) therapy on health-related quality of life (HRQOL). Included were the MOS SF-36 Health Survey, additional measures of mental health, cognition, epilepsy-specific perception of control, behavioural problems, distress, worries and experiences, the Liverpool Epilepsy Impact and Seizure Severity scales, and a patient-completed symptom checklist. Questionnaires were completed twice by 136 patients on AED therapy in a multicentre study in the UK. Validity was assessed in relation to disease severity, defined as time since last seizure, and to patient-reported symptoms. Statistical analyses to estimate the contribution of HRQOL information of each scale relative to that of others were conducted. The 171-item questionnaire could be completed by out-patients with epilepsy with good data quality. With few exceptions, generic and epilepsy-specific measures satisfied psychometric tests of hypothesized item groupings and scale score reliability (internal consistency and test-retest reliability) and differentiated well between groups of patients differing in time since last seizure and in symptom impact, regardless of time since last seizure. However, scales differed widely in their validity in discriminating between groups of patients known to differ clinically. The SF-36 Role Physical scale best discriminated among groups differing in disease severity. The epilepsy-specific Mastery, Impact, Experience, Worry, Distress, and Agitation scales were among the 10 best measures in discriminating among groups differing in disease severity. Generic measures, especially measures of social and role functioning and mental health, were best at differentiating groups of patients differenting in symptom impact. Recommendations are offered for concepts and specific scales most likely to be useful in future studies of the HRQOL burden of epilepsy and the HRQOL benefits of AED therapy.

Key words

Epilepsy health-related quality of life health status assessment MOS SF-36 Health Survey seizure control seizure severity symptoms validity 


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Copyright information

© Rapid Communications of Oxford Ltd 1995

Authors and Affiliations

  • A. K. Wagner
    • 1
  • S. D. Keller
    • 1
  • M. Kosinski
    • 1
  • G. A. Baker
    • 2
  • A. Jacoby
    • 3
  • M. -A. Hsu
    • 4
  • D. W. Chadwick
    • 2
  • J. E. WareJr
    • 1
    • 5
  1. 1.The Health InstituteNew England Medical Center Box #345BostonUSA
  2. 2.Walton HospitalUniversity Department of NeurosciencesLiverpoolUK
  3. 3.Center for Health Services ResearchUniversity of Newcastle Upon TypeUK
  4. 4.Schering-Plough CorporationKenilworth
  5. 5.School of Public HealthHarvard UniversityBostonUSA

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