Development of the quality of life in epilepsy inventory for adolescents: The QOLIE-AD-48

Purpose: We report the development of an instrument to assess health-relate d quality of life (HRQOL) in adolescents with epilepsy. Methods: A sample of 197 English-speaking adolescents (aged 11-17 years) wi th epilepsy completed a test questionnaire of 88 items. Also included were mastery and self-esteem scales to assess external validity. A parent simult aneously completed an Ii-item questionnaire to evaluate the child's HRQOL. Both adolescent and parent questionnaires were repeated in 2-4 weeks. Demog raphic 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 sub scales: epilepsy im pact (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, wi th higher scores indicating better HRQOL. Internal construct validity was d emonstrated in a single-factor solution for the eight dimensions. All corre lations were statistically significant at p < 0.05 level. Internal consiste ncy 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 relia bility 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 summa ry 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 stron g evidence that the QOLIE-AD-48 is both a reliable and valid measure for ad olescents with epilepsy.