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Arch Phys Med Rehabil. 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.

Author information

1
Department of Physical Medicine and Rehabilitation, University of Michigan Medical School, Ann Arbor, MI 48109-2800, USA. dtulsky@med.umich.edu

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.

PMID:
21958922
PMCID:
PMC6309317
DOI:
10.1016/j.apmr.2011.04.024
[Indexed for MEDLINE]
Free PMC Article

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