caa a22 4500 606178244 CHVBK 20210128100755.0 cr unu---uuuuu 210128e20150601xx s 000 0 eng 10.1007/s11136-014-0867-5 doi (NATIONALLICENCE)springer-10.1007/s11136-014-0867-5 Disease-targeted versus generic measurement of health-related quality of life in epilepsy [Elektronische Daten] [Christine Baca, Barbara Vickrey, Stefanie Vassar, Anne Berg] Purpose: 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. Methods: A cohort of young adults with epilepsy (N=108, age 21.6years 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=20.7years, SD=2.1) completed the generic core, SF-36. Results: 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≥5years (higher HRQOL), n=57; seizure-free 1-5years, n=22; or seizure-free <1year, 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. Conclusions: 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. Springer International Publishing Switzerland, 2014 Epilepsy nationallicence Quality of Life in Epilepsy Inventory (QOLIE-89) nationallicence SF-36 nationallicence Disease targeted nationallicence Generic nationallicence Sibling control nationallicence Baca Christine Department of Neurology, University of California, C-239 RNRC, Box 951769, Los Angeles, CA, USA aut Vickrey Barbara Department of Neurology, University of California, C-239 RNRC, Box 951769, Los Angeles, CA, USA aut Vassar Stefanie Department of General Internal Medicine and Health Services Research, University of California, Los Angeles, CA, USA aut Berg Anne Department of Pediatrics, Epilepsy Center, Northwestern Memorial Feinberg School of Medicine, Ann & Robert H. Lurie Children's Hospital of Chicago, Chicago, IL, USA aut Quality of Life Research Springer International Publishing 24/6(2015-06-01), 1379-1387 0962-9343 24:6<1379 2015 24 11136 https://doi.org/10.1007/s11136-014-0867-5 text/html Onlinezugriff via DOI BK010053 XK010053 XK010000 Metadata rights reserved Springer special CC-BY-NC licence nationallicence 1 research-article jats NATIONALLICENCE NATIONALLICENCE NL-springer NATIONALLICENCE 856 40 https://doi.org/10.1007/s11136-014-0867-5 text/html Onlinezugriff via DOI NATIONALLICENCE 700 1- Baca Christine Department of Neurology, University of California, C-239 RNRC, Box 951769, Los Angeles, CA, USA aut NATIONALLICENCE 700 1- Vickrey Barbara Department of Neurology, University of California, C-239 RNRC, Box 951769, Los Angeles, CA, USA aut NATIONALLICENCE 700 1- Vassar Stefanie Department of General Internal Medicine and Health Services Research, University of California, Los Angeles, CA, USA aut NATIONALLICENCE 700 1- Berg Anne Department of Pediatrics, Epilepsy Center, Northwestern Memorial Feinberg School of Medicine, Ann & Robert H. Lurie Children's Hospital of Chicago, Chicago, IL, USA aut NATIONALLICENCE 773 0- Quality of Life Research Springer International Publishing 24/6(2015-06-01), 1379-1387 0962-9343 24:6<1379 2015 24 11136