Related Experiment Video
Updated: May 29, 2026
Methodology for Establishing a Community-Wide Life Laboratory for Capturing Unobtrusive and Continuous Remote Activity and Health Data
Published on: July 27, 2018
The neurology quality-of-life measurement initiative
David Cella1, Cindy Nowinski, Amy Peterman
1Department of Medical Social Sciences, Northwestern University Feinberg School of Medicine, Chicago, IL 60611, USA. d-cella@northwestern.edu
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.
