Development of the Quality of Life in Epilepsy Inventory for Adolescents: the QOLIE-AD-48.
OBJECTIVE
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.
Cramer
J A
JA
Yale University School of Medicine and VA Connecticut Healthcare System, Department of Psychiatry, New Haven 06516-2770, USA. Joyce.Cramer@Yale.Edu
Westbrook
L E
LE
Devinsky
O
O
Perrine
K
K
Glassman
M B
MB
Camfield
C
C
D000293:Adolescent; D000367:Age Factors; D000927:Anticonvulsants / Q000627:therapeutic use; D001294:Attitude to Health; D002648:Child; D004827:Epilepsy / Q000175:diagnosis* / Q000188:drug therapy / Q000523:psychology; D005163:Factor Analysis, Statistical; D005192:Family Health; D005260:Female; D006304:Health Status; D006801:Humans; D008297:Male; D009460:Neurologic Examination; D010290:Parents / Q000523:psychology; D010555:Personality Inventory / Q000706:statistics & numerical data*; D011594:Psychometrics; D011788:Quality of Life; D015203:Reproducibility of Results; D012494:Sampling Studies; D011795:Surveys and Questionnaires
D000927:Anticonvulsants