Advances in Outcomes Measurement in Rehabilitation Medicine: Current Initiatives from the National Institutes of Health and the National Institute on Disability and Rehabilitation Research

• Published in: Archives of physical medicine and rehabilitation Vol. 92; no. 10; pp. S1 - S6
• Main Authors: Tulsky, David S., PhD, Carlozzi, Noelle E., PhD, Cella, David, PhD
• Format: Journal Article
• Language: English
• Published: United States Elsevier Inc 01.10.2011
• Subjects: Academies and Institutes; Government Agencies; Health Services Research; Health-related quality of life; Humans; National Institutes of Health (U.S.); Outcome assessment (health care); Patient-reported outcomes; Physical Medicine and Rehabilitation; Quality of Life; Rehabilitation; Rehabilitation - standards; Self Disclosure; United States; United States Department of Veterans Affairs; United States; ACRM; CDE; ADL; Traumatic Brain Injury Quality of Life; activity of daily living; IRT; National Institutes of Health; American Congress of Rehabilitation Medicine; PRO; SCI-QOL; TBI; Outcome assessment (health care); computerized adaptive test; National Institute of Neurological Disorders and Stroke; spinal cord injury; Health-related quality of life; MS; multiple sclerosis; PROMIS; traumatic brain injury; AM-PAC; NIH; Quality of Life in Neurological Disorders; Quality of life; Activity Measure for Post Acute Care; NINDS; Spinal Cord Injury Quality of Life; common data element; CAT; SCI; HRQOL; TBI-QOL; Patient-reported outcomes; Rehabilitation; item response theory; Patient Reported Outcomes Measurement Information System; Neuro-QOL
• ISSN: 0003-9993; 1532-821X
• DOI: 10.1016/j.apmr.2011.07.202

Abstract Tulsky DS, Carlozzi NE, Cella D. Advances in outcomes measurement in rehabilitation medicine: current initiatives from the National Institutes of Health and the National Institute on Disability and Rehabilitation Research. The articles in this supplement present recent advances in the measurement of patient-reported health-related quality-of-life (HRQOL) outcomes. Specifically, these articles highlight the combined efforts of the National Institutes of Health, National Institute for Neurological Disorders and Stroke, National Center on Medical Rehabilitation Research, National Institute on Disability and Rehabilitation Research, and Department of Veterans Affairs Rehabilitation Research and Development Service to improve HRQOL measurement. In addition, this supplement is intended to provide rehabilitation professionals with information about these efforts and the implications that these advances in outcomes measurement have for rehabilitation medicine and clinical practice. These new measurement scales use state-of-the-art method techniques, including item response theory and computerized adaptive testing. In addition, scale development involves both qualitative and quantitative methods, as well as the administration of items to hundreds or even thousands of research participants. The scales deliberately have been built with overlap of items between scales so that linkages and equivalency scores can be computed. Ultimately, these scales should facilitate direct comparison of outcomes instruments across studies and will serve as standard data elements across research trials without compromising the specificity of disease- or condition-targeted measures. This supplement includes the initial publications for many of these new measurement initiatives, each of which provides researchers and clinicians with better tools for evaluation of the efficacy of their interventions.