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

David S. Tulsky*, Pamela A. Kisala, David Victorson, Denise Tate, Allen W. Heinemann, Dagmar Amtmann, David Cella

*Corresponding author for this work

Research output: Contribution to journalComment/debatepeer-review

59 Scopus citations

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.

Original languageEnglish (US)
Pages (from-to)S44-S51
JournalArchives of physical medicine and rehabilitation
Volume92
Issue number10 SUPPL.
DOIs
StatePublished - Oct 2011

Keywords

  • Outcome assessment (health care)
  • Quality of life
  • Rehabilitation
  • Spinal cord injuries

ASJC Scopus subject areas

  • Physical Therapy, Sports Therapy and Rehabilitation
  • Rehabilitation

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