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Disease-targeted versus generic measurement of health-related quality of life in epilepsy

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To assess (1) whether the generic Short Form (SF)-36, an integrated component of the epilepsy-targeted Quality of Life in Epilepsy Inventory-89 (QOLIE-89), is able to detect differences in the health-related quality of life (HRQOL) between young adults with epilepsy and healthy sibling controls and (2) whether the generic components are as sensitive to within-disease symptom severity as the epilepsy-targeted components of the QOLIE-89 in young adults with epilepsy.


A cohort of young adults with epilepsy (N = 108, age 21.6 years SD = 3.8), followed since diagnosis in a prospective community-based study of childhood-onset epilepsy, completed the QOLIE-89, an epilepsy-targeted HRQOL instrument that includes within it a generic core measure (SF-36). Sibling controls (N = 82, age = 20.7 years, SD = 2.1) completed the generic core, SF-36.


Age- and gender-adjusted QOLIE-89 epilepsy-targeted and cognitive-distress composite scores and the overall score were strongly associated with seizure-free duration: seizure-free ≥5 years (higher HRQOL), n = 57; seizure-free 1–5 years, n = 22; or seizure-free <1 year, n = 29 (lower HRQOL) (p < 0.001). However, on QOLIE-89 physical health and mental health composite scores, there were no differences across these seizure-free duration groups. For cases compared with sibling controls, there were no differences on SF-36 physical and mental health composite scores or the global composite score, using either classical test or item-response theory scoring procedures.


While the epilepsy-targeted components of the QOLIE-89 are sensitive to seizure-related factors in young adults with epilepsy, the SF-36 generic core measures are not, thereby limiting HRQOL comparisons between young adults with epilepsy and sibling controls.

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This study is supported by a Grant from the National Institutes of Health, NINDS R37-NS31146 (PI-Berg). Dr. Baca receives support from Grant NINDS-R37-NS31146. Dr. Vickrey receives support from Grant NINDS R37 NS31146. She serves on the scientific advisory boards for the Sports Concussion Institute and is a section editor for Stroke, receives research support from NINDS, the US Veterans Administration Health Services Research and Development Service, the American Heart Association; and UniHealth Foundation, and she is a consultant to EMD Serono Canada and Genentech. Dr. Vassar received support from Grant NINDS R37 NS31146. She receives support from UCLA Clinical and Translational Institute Catalyst Award (NIH/NCATS/ULITR000124) Dr. Berg receives support from Grant NINDS-R37-NS31146 and Grant funds from the Pediatric Epilepsy Research Foundation. She serves on the Editorial Boards of Epileptic Disorders, Epilepsy and Behavior and Neurology.

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Correspondence to Christine B. Baca.

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Baca, C.B., Vickrey, B.G., Vassar, S. et al. Disease-targeted versus generic measurement of health-related quality of life in epilepsy. Qual Life Res 24, 1379–1387 (2015).

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