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

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Abstract
Summary: 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 testretest 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.