Development and validation of the positive affect and well-being scale for the neurology quality of life (Neuro-QOL) measurement system
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To develop and validate an item-response theory-based patient-reported outcomes assessment tool of positive affect and well-being (PAW). This is part of a larger NINDS-funded study to develop a health-related quality of life measurement system across major neurological disorders, called Neuro-QOL.
Informed by a literature review and qualitative input from clinicians and patients, item pools were created to assess PAW concepts. Items were administered to a general population sample (N = 513) and a group of individuals with a variety of neurologic conditions (N = 581) for calibration and validation purposes, respectively.
A 23-item calibrated bank and a 9-item short form of PAW was developed, reflecting components of positive affect, life satisfaction, or an overall sense of purpose and meaning. The Neuro-QOL PAW measure demonstrated sufficient unidimensionality and displayed good internal consistency, test–retest reliability, model fit, convergent and discriminant validity, and responsiveness.
The Neuro-QOL PAW measure was designed to aid clinicians and researchers to better evaluate and understand the potential role of positive health processes for individuals with chronic neurological conditions. Further psychometric testing within and between neurological conditions, as well as testing in non-neurologic chronic diseases, will help evaluate the generalizability of this new tool.
KeywordsPositive affect Psychological well-being Quality of life Measurement Patient-reported outcomes Neurological conditions
Quality of Life in Neurological Disorders (Neuro-QOL) is a multi-site National Institute of Neurological Diseases and Stroke (NINDS) initiative to develop a clinically relevant and psychometrically robust health-related quality of life (HRQoL) assessment tool for adults and children that is responsive to the needs of researchers in a variety of neurological disorders and settings and facilitate comparisons of data across clinical trials in different diseases. Neuro-QOL contract was awarded by NINDS to NorthShore University HealthSystem Research Institute (PIs: David Cella, PhD and Cindy Nowinski, MD, PhD, HHSN265200423601C) and further subcontracted to the following research sites: Department of Medical Social Sciences at Northwestern University Feinberg School of Medicine (PI: David Cella, PhD), Rehabilitation Institute of Chicago (PI: Allen Heinemann, PhD), Cleveland Clinic Foundation (PIs: Deborah Miller, PhD and François Bethoux, MD), University of North Carolina at Charlotte (PI: Amy Peterman, PhD), Boston University (PI: Alan Jetty, PhD), University of Texas Health Science Center at San Antonio (PI: Jose Cavazos, MD, PhD), Dartmouth-Hitchcock Medical Center (PI: Gregory Holmes, MD), University of Pennsylvania Medical System (PI: Andrew Siderowf, MD), Northwestern University Parkinson’s Disease and Movement Disorder Center (PI: Tanya Simuni, MD), University of Chicago (PI: Anthony Reder, MD), Northwestern University Medical Faculty Foundation (PI: Robert Sufit, MD), University of California at Davis (PI: Craig McDonald, MD), Children Memorial Hospital (PI: Douglas Nordli, MD), University of Puerto Rico (PI: Valerie Wojna, MD), and Westat, Inc (PI: Lori Perez, PhD). NIH Project Officer on this project is Claudia Scala Moy, PhD. This manuscript was reviewed by the Neuro-QOL Publications Subcommittee prior to external peer review. See the web site at www.neuroqol.org for additional information on the project.
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