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

108 Citations (Scopus)

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

Fingerprint

Neurology
Nervous System Diseases
Quality of Life
Pediatrics
Epilepsy
Stroke
National Institute of Neurological Disorders and Stroke
Puerto Rico
Muscular Dystrophies
Amyotrophic Lateral Sclerosis
Proxy
Calibration
Population
Multiple Sclerosis
Parkinson Disease
Outcome Assessment (Health Care)
Health

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

Cite this

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title = "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.",
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The neurology quality-of-life measurement initiative. / Cella, David; Nowinski, Cindy J; Peterman, Amy; Victorson, David E; Miller, Deborah; Lai, Jin-Shei; Moy, Claudia.

In: Archives of physical medicine and rehabilitation, Vol. 92, No. 10 SUPPL., 01.10.2011.

Research output: Contribution to journalArticle

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AU - Cella, David

AU - Nowinski, Cindy J

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AU - Victorson, David E

AU - Miller, Deborah

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AU - Moy, Claudia

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AB - 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.

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