Developing a Contemporary Patient-Reported Outcomes Measure for Spinal Cord Injury

• Published in: Archives of physical medicine and rehabilitation Vol. 92; no. 10; pp. S44 - S51
• Main Authors: Tulsky, David S., PhD, Kisala, Pamela A., MA, Victorson, David, PhD, Tate, Denise, PhD, Heinemann, Allen W., PhD, Amtmann, Dagmar, PhD, Cella, David, PhD
• Format: Journal Article
• Language: English
• Published: United States Elsevier Inc 01.10.2011
• Subjects: Adult; Data processing; Disability Evaluation; Emotions; Female; Focus Groups; Hospitals; Humans; Information Systems; Male; Middle Aged; Outcome assessment (health care); Physical Medicine and Rehabilitation; Psychometrics; Quality of Life; Recovery of Function; Rehabilitation; Rehabilitation - standards; Self Disclosure; Spinal cord injuries; Spinal Cord Injuries - physiopathology; Spinal Cord Injuries - psychology; Spinal Cord Injuries - rehabilitation; Spinal cord injury; Surveys and Questionnaires; computer adaptive test; IRT; PRO; SWLS; SCI-QOL; Medical Outcomes Study 36-Item Short Form Health Survey; Satisfaction With Life Scale; Outcome assessment (health care); WHO; Quadriplegia Index of Function; spinal cord injury; patient-reported outcomes; World Health Organization; PROMIS; Spinal Cord Injury Quality of Life Measurement System; health-related quality of life; Quality of Life in Neurological Disorders; Quality of life; QIF; QOL; SF-36; CAT; SCI; HRQOL; Spinal cord injuries; Rehabilitation; item response theory; Patient Reported Outcomes Measurement Information System; Neuro-QOL
• ISSN: 0003-9993; 1532-821X
• DOI: 10.1016/j.apmr.2011.04.024

Abstract Tulsky DS, Kisala PA, Victorson D, Tate D, Heinemann AW, Amtmann D, Cella D. Developing a contemporary patient-reported outcomes measure for spinal cord injury. 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.