David Cella|Cindy J. Nowinski|Amy H. Peterman|David Victorson|Deborah Miller|Jin Shei Lai|Claudia S. Moy
The Neurology Quality-of-Life Measurement Initiative
Northwestern University|Northwestern University|University of North Carolina at Charlotte|Northwestern University|Cleveland Clinic|Northwestern University|National Institute of Neurological Disorders and Stroke|National Institutes of Health
cella nowinski c peterman victorson miller lai js moy c neurology qualityoflife measurement initiative objective describe development calibration banks scales quality life neurological disorders neuroqol project commissioned national institute neurological disorders stroke develop bilingual englishspanish clinically relevant psychometrically robust healthrelated qualityoflife hrqol assessment tool design classic modern test construction methods used including input essential stakeholder groups setting online patient panel testing service 11 academic medical centers clinics across united states puerto rico treat major neurologic disorders participants adult pediatric patients representing different neurologic disorders specified study proxy respondents select conditions stroke pediatric conditions english spanishspeaking participants general population interventions applicable main outcome measures multiple generic conditionspecific measures used provide construct validity evidence new neuroqol tool results neuroqol developed 14 generic item banks 8 targeted scales assess hrqol 5 adult stroke multiple sclerosis parkinsons disease epilepsy amyotrophic lateral sclerosis 2 pediatric conditions epilepsy muscular dystrophies conclusions neuroqol system continue evolve validation efforts clinical populations new bank development health domains presently included potential neuroqol measures rehabilitation research clinical settings discussed