The neurology quality-of-life measurement initiative

David Cella*, Cindy J Nowinski, Amy Peterman, David E Victorson, Deborah Miller, Jin-Shei Lai, Claudia Moy

*Corresponding author for this work

Research output: Contribution to journalArticle

111 Scopus citations

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.

Original languageEnglish (US)
JournalArchives of physical medicine and rehabilitation
Volume92
Issue number10 SUPPL.
DOIs
StatePublished - Oct 1 2011

Keywords

  • Clinical research
  • Health-related quality of life
  • Neurology
  • Patient-reported outcomes
  • Quality of life
  • Rehabilitation

ASJC Scopus subject areas

  • Physical Therapy, Sports Therapy and Rehabilitation
  • Rehabilitation

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