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Multicenter Study
. 2011 Oct;92(10 Suppl):S44-51.
doi: 10.1016/j.apmr.2011.04.024.

Developing a contemporary patient-reported outcomes measure for spinal cord injury

David S Tulsky  1 , Pamela A Kisala, David Victorson, Denise Tate, Allen W Heinemann, Dagmar Amtmann, David Cella
Affiliations
Multicenter Study

Developing a contemporary patient-reported outcomes measure for spinal cord injury

David S Tulsky et al. Arch Phys Med Rehabil. 2011 Oct.

Abstract

Objective: To develop a spinal cord injury (SCI)-specific patient-reported outcome (PRO) measure of health-related quality of life (QOL) covering multiple domains of functioning, including physical, emotional, and social health.

Design: Focus groups.

Setting: Four SCI Model Systems rehabilitation hospitals.

Participants: Individuals with SCI (n=65) and clinicians (n=42).

Interventions: Not applicable.

Main outcome measure: Spinal Cord Injury Quality of Life Measurement System (SCI-QOL).

Results: Qualitative analysis yielded 3 domains of primary importance: physical-medical health, emotional health, and social participation. Results were used to guide domain and item decisions in the development of the SCI-QOL PRO measurement system. Qualitative data were used to develop item pools with item content specific to individuals with SCI across a wide spectrum of functioning. When possible, items from other major measurement initiatives were included verbatim in the item pools to link the measurement systems and facilitate cross-study and cross-population comparisons.

Conclusions: Issues that affect individuals' QOL after SCI are varied and several issues are unique to individuals who have had a traumatic injury. From these qualitative data, 3 major domains and 18 subdomains of functioning were identified. Item pools were developed in each of these 18 areas to measure functioning related to physical-medical issues, emotional status, and social participation.

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References

    1. National Spinal Cord Injury Database. [Accessed 10/22/2010]; https://www.nscisc.uab.edu/public_content/nscisc_database.aspx.
    1. Foundation CaDR . One degree of separation: Paralysis and spinal cord injury in the United States. Short Hills, NJ: 2009.
    1. Noreau L, Fougeyrollas P. Long-term consequences of spinal cord injury on social participation: the occurrence of handicap situations. Disabil Rehabil. 2000 Mar 10;22(4):170–180. - PubMed
    1. Weaver FM, Hammond MC, Guihan M, Hendricks RD. Department of Veterans Affairs Quality Enhancement Research Initiative for spinal cord injury. Med Care. 2000 Jun;38(6 Suppl 1):I82–91. - PubMed
    1. Wilson JR, Hashimoto RE, Dettori JR, Fehlings MG. Spinal Cord Injury and quality of life: a systematic review of outcome measures. Evidence-Based Spine-Care. 2011;2(1):37–44. - PMC - PubMed

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