The neurology quality-of-life measurement initiative

Arch Phys Med Rehabil. 2011 Oct;92(10 Suppl):S28-36. doi: 10.1016/j.apmr.2011.01.025.


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.

Publication types

  • Research Support, N.I.H., Extramural

MeSH terms

  • Adult
  • Aged
  • Aged, 80 and over
  • Calibration
  • Disability Evaluation
  • Female
  • Focus Groups
  • Humans
  • Information Systems*
  • Male
  • Middle Aged
  • National Institutes of Health (U.S.)*
  • Nervous System Diseases / rehabilitation*
  • Outcome Assessment, Health Care*
  • Psychometrics
  • Puerto Rico
  • Quality of Life*
  • Self Disclosure
  • Surveys and Questionnaires
  • United States