@article{ref1,
title="Developing a contemporary patient-reported outcomes measure for spinal cord injury",
journal="Archives of physical medicine and rehabilitation",
year="2011",
author="Tulsky, David S. and Kisala, Pamela A. and Victorson, David and Tate, Denise and Heinemann, Allen W. and Amtmann, Dagmar and Cella, David",
volume="92",
number="10 Suppl",
pages="S44-S51",
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.<p /> <p>Language: en</p>",
language="en",
issn="0003-9993",
doi="10.1016/j.apmr.2011.04.024",
url="http://dx.doi.org/10.1016/j.apmr.2011.04.024"
}