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


Tulsky DS, Kisala PA, Victorson D, Tate D, Heinemann AW, Amtmann D, Cella D



Publication Info:

Arch Phys Med Rehabil 92, 92(10 Suppl):S44-51


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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