Development of the Quality of Life in Epilepsy Inventory for Adolescents: the QOLIE-AD-48

Epilepsia. 1999 Aug;40(8):1114-21. doi: 10.1111/j.1528-1157.1999.tb00828.x.


Purpose: We report the development of an instrument to assess health-related quality of life (HRQOL) in adolescents with epilepsy.

Methods: A sample of 197 English-speaking adolescents (aged 11-17 years) with epilepsy completed a test questionnaire of 88 items. Also included were mastery and self-esteem scales to assess external validity. A parent simultaneously completed an 11-item questionnaire to evaluate the child's HRQOL. Both adolescent and parent questionnaires were repeated in 2-4 weeks. Demographic information and information pertaining to seizures were collected at baseline along with assessment of systemic and neurologic toxicity.

Results: The QOLIE-AD-48 contains 48 items in eight subscales: epilepsy impact (12 items), memory/concentration (10), attitudes toward epilepsy (four), physical functioning (five), stigma (six), social support (four), school behavior (four), health perceptions (three), and a total summary score, with higher scores indicating better HRQOL. Internal construct validity was demonstrated in a single-factor solution for the eight dimensions. All correlations were statistically significant at p < 0.05 level. Internal consistency reliability estimated by Cronbach's alpha coefficient was 0.74 for the summary score and ranged from a low of 0.52 (three-item Health Perceptions Scale) to 0.73-0.94 for the other individual scales. Good test-retest reliability was found for the overall measure (0.83). Summary score correlations with the two external validity scales, self-efficacy and self-esteem were 0.65 and 0.54, respectively. Statistically significant differences in summary scores indicating that HRQOL was increasingly better for adolescents as seizure severity decreases (no seizures = 77+/-13, low = 70+/-17, high = 63+/-17) were found among seizure-severity groups.

Conclusions: These data describe the development of a robust instrument to evaluate HRQOL in adolescents with epilepsy. Empiric analyses provide strong evidence that the QOLIE-AD-48 is both a reliable and valid measure for adolescents with epilepsy.

Publication types

  • Multicenter Study

MeSH terms

  • Adolescent
  • Age Factors
  • Anticonvulsants / therapeutic use
  • Attitude to Health
  • Child
  • Epilepsy / diagnosis*
  • Epilepsy / drug therapy
  • Epilepsy / psychology
  • Factor Analysis, Statistical
  • Family Health
  • Female
  • Health Status*
  • Humans
  • Male
  • Neurologic Examination
  • Parents / psychology
  • Personality Inventory / statistics & numerical data*
  • Psychometrics
  • Quality of Life*
  • Reproducibility of Results
  • Sampling Studies
  • Surveys and Questionnaires


  • Anticonvulsants