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      Overview of the Spinal Cord Injury – Quality of Life (SCI-QOL) measurement system

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          Abstract

          Context/Objective

          The Spinal Cord Injury – Quality of Life (SCI-QOL) measurement system was developed to address the shortage of relevant and psychometrically sound patient reported outcome (PRO) measures available for clinical care and research in spinal cord injury (SCI) rehabilitation. Using a computer adaptive testing (CAT) approach, the SCI-QOL builds on the Patient Reported Outcomes Measurement Information System (PROMIS) and the Quality of Life in Neurological Disorders (Neuro-QOL) initiative. This initial manuscript introduces the background and development of the SCI-QOL measurement system. Greater detail is presented in the additional manuscripts of this special issue.

          Design

          Classical and contemporary test development methodologies were employed. Qualitative input was obtained from individuals with SCI and clinicians through interviews, focus groups, and cognitive debriefing. Item pools were field tested in a multi-site sample ( n = 877) and calibrated using item response theory methods. Initial reliability and validity testing was performed in a new sample of individuals with traumatic SCI ( n = 245).

          Setting

          Five Model SCI System centers and one Department of Veterans Affairs Medical Center across the United States.

          Participants

          Adults with traumatic SCI.

          Interventions

          n/a

          Outcome Measures

          n/a

          Results

          The SCI-QOL consists of 19 item banks, including the SCI-Functional Index banks, and 3 fixed-length scales measuring physical, emotional, and social aspects of health-related QOL (HRQOL).

          Conclusion

          The SCI-QOL measurement system consists of psychometrically sound measures for individuals with SCI. The manuscripts in this special issue provide evidence of the reliability and initial validity of this measurement system. The SCI-QOL also links to other measures designed for a general medical population.

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          Most cited references84

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          Psychosocial resilience and protective mechanisms.

          Michael Rutter (1987)
          The concept of mechanisms that protect people against the psychological risks associated with adversity is discussed in relation to four main processes: reduction of risk impact, reduction of negative chain reactions, establishment and maintenance of self-esteem and self-efficacy, and opening up of opportunities. The mechanisms operating at key turning points in people's lives must be given special attention.
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            The functional independence measure: a new tool for rehabilitation.

            R Keith, C V Granger, B Hamilton … (1987)
            Article 0 comments Cited 258 times – based on 0 reviews     Review now
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              The future of outcomes measurement: item banking, tailored short-forms, and computerized adaptive assessment.

              Jin-Shei Lai, Richard Gershon, Seung-Kwon Choi … (2006)
              The use of item banks and computerized adaptive testing (CAT) begins with clear definitions of important outcomes, and references those definitions to specific questions gathered into large and well-studied pools, or "banks" of items. Items can be selected from the bank to form customized short scales, or can be administered in a sequence and length determined by a computer programmed for precision and clinical relevance. Although far from perfect, such item banks can form a common definition and understanding of human symptoms and functional problems such as fatigue, pain, depression, mobility, social function, sensory function, and many other health concepts that we can only measure by asking people directly. The support of the National Institutes of Health (NIH), as witnessed by its cooperative agreement with measurement experts through the NIH Roadmap Initiative known as PROMIS (www.nihpromis.org), is a big step in that direction. Our approach to item banking and CAT is practical; as focused on application as it is on science or theory. From a practical perspective, we frequently must decide whether to re-write and retest an item, add more items to fill gaps (often at the ceiling of the measure), re-test a bank after some modifications, or split up a bank into units that are more unidimensional, yet less clinically relevant or complete. These decisions are not easy, and yet they are rarely unforgiving. We encourage people to build practical tools that are capable of producing multiple short form measures and CAT administrations from common banks, and to further our understanding of these banks with various clinical populations and ages, so that with time the scores that emerge from these many activities begin to have not only a common metric and range, but a shared meaning and understanding across users. In this paper, we provide an overview of item banking and CAT, discuss our approach to item banking and its byproducts, describe testing options, discuss an example of CAT for fatigue, and discuss models for long term sustainability of an entity such as PROMIS. Some barriers to success include limitations in the methods themselves, controversies and disagreements across approaches, and end-user reluctance to move away from the familiar.
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                Author and article information

                Journal
                Journal ID (nlm-ta): J Spinal Cord Med
                Journal ID (iso-abbrev): J Spinal Cord Med
                Journal ID (publisher-id): SCM
                Title: The Journal of Spinal Cord Medicine
                Publisher: Maney Publishing
                ISSN (Print): 1079-0268
                ISSN (Electronic): 2045-7723
                Publication date (Print): May, 2015
                Volume: 38
                Issue: 3 , The Spinal Cord Injury - Quality of Life Measurement System: Development, Psychometrics, and Item Bank Calibration Guest Editors: David S. Tulsky, PhD and Pamela A. Kisala, MA Guest Associate Editor: J. Scott Richards, PhD
                Pages: 257-269
                Affiliations
                [1 ]Department of Physical Therapy, University of Delaware, College of Health Sciences, Newark, DE, USA
                [2 ]Kessler Foundation, West Orange, NJ, USA
                [3 ]Northwestern University Feinberg School of Medicine, Chicago, IL, USA
                [4 ]University of Michigan Medical School, Ann Arbor, MI, USA
                [5 ]Rehabilitation Institute of Chicago, Chicago, IL, USA
                [6 ]Craig Hospital, Englewood, CO, USA
                [7 ]Kessler Institute for Rehabilitation, West Orange, NJ, USA
                [8 ]New Jersey Medical School, Rutgers University, Newark, NJ, USA
                [9 ]James J. Peters VA Medical Center, Bronx, NY, USA
                [10 ]University of Washington, Seattle, WA, USA
                [11 ]CTB-McGraw Hill, LLC, Monterey, CA, USA
                [12 ]Boston University School of Public Health, Boston, MA, USA
                Author notes
                Correspondence to: David S. Tulsky, Professor and Director of the Center on Assessment Research and Translation, STAR Campus, University of Delaware, 540 S. College Ave, Newark, DE 19713, USA. Email: dtulsky@ 123456udel.edu
                Article
                Publisher ID: scm-38-257
                DOI: 10.1179/2045772315Y.0000000023
                PMC ID: 4445018
                PubMed ID: 26010962
                SO-VID: 0e334a4d-453c-422f-ac46-cc45d9ee47a1
                Copyright © © The Academy of Spinal Cord Injury Professionals, Inc. 2015
                License:

                MORE OpenChoice articles are open access and distributed under the terms of the Creative Commons Attribution License 3.0

                History
                Categories
                Subject: Research Articles

                ScienceOpen disciplines: Neurology
                Keywords: computer adaptive testing,health-related quality of life,item response theory,patient reported outcomes,spinal cord injury
                Data availability:
                ScienceOpen disciplines: Neurology
                Keywords: computer adaptive testing, health-related quality of life, item response theory, patient reported outcomes, spinal cord injury

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