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Citation |
Tulsky DS, Kisala PA, Victorson D, Tate D, Heinemann AW, Amtmann D, Cella D. Arch. Phys. Med. Rehabil. 2011; 92(10 Suppl): S44-S51. |
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Affiliation |
Department of Physical Medicine and Rehabilitation, University of Michigan Medical School, Ann Arbor, MI. |
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Copyright |
(Copyright © 2011, Elsevier Publishing) |
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DOI |
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PMID |
21958922 |
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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. Language: en |