The neurology quality-of-life measurement initiative.

Abstract:

OBJECTIVE:To describe the development and calibration of the banks and scales of the Quality of Life in Neurological Disorders (Neuro-QOL) project, commissioned by the National Institute of Neurological Disorders and Stroke to develop a bilingual (English/Spanish), clinically relevant, and psychometrically robust health-related quality-of-life (HRQOL) assessment tool. DESIGN:Classic and modern test construction methods were used, including input from essential stakeholder groups. SETTING:An online patient panel testing service and 11 academic medical centers and clinics from across the United States and Puerto Rico that treat major neurologic disorders. PARTICIPANTS:Adult and pediatric patients representing different neurologic disorders specified in this study, proxy respondents for select conditions (stroke, pediatric conditions), and English- and Spanish-speaking participants from the general population. INTERVENTIONS:Not applicable. MAIN OUTCOME MEASURES:Multiple generic and condition-specific measures used to provide construct validity evidence for the new Neuro-QOL tool. RESULTS:Neuro-QOL has developed 14 generic item banks and 8 targeted scales to assess HRQOL in 5 adult (stroke, multiple sclerosis, Parkinson's disease, epilepsy, amyotrophic lateral sclerosis) and 2 pediatric conditions (epilepsy, muscular dystrophies). CONCLUSIONS:The Neuro-QOL system will continue to evolve, with validation efforts in clinical populations and new bank development in health domains not presently included. The potential for Neuro-QOL measures in rehabilitation research and clinical settings is discussed.

journal_name

Arch Phys Med Rehabil

authors

Cella D,Nowinski C,Peterman A,Victorson D,Miller D,Lai JS,Moy C

doi

10.1016/j.apmr.2011.01.025

subject

Has Abstract

pub_date

2011-10-01 00:00:00

pages

S28-36

issue

10 Suppl

eissn

0003-9993

issn

1532-821X

pii

S0003-9993(11)00438-2

journal_volume

92

pub_type

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