title: Developing a contemporary patient-reported outcomes measure for spinal cord injury.
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.
  
  
  METHODS
  Focus groups.
  
  
  METHODS
  Four SCI Model Systems rehabilitation hospitals.
  
  
  METHODS
  Individuals with SCI (n=65) and clinicians (n=42).
  
  
  METHODS
  Not applicable.
  
  
  METHODS
  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.
authors.affiliation: Department of Physical Medicine and Rehabilitation, University of Michigan Medical School, Ann Arbor, MI 48109-2800, USA. dtulsky@med.umich.edu
authors.forename: David S
authors.initials: DS
authors.lastname: Tulsky
authors.forename: Pamela A
authors.initials: PA
authors.lastname: Kisala
authors.forename: David
authors.initials: D
authors.lastname: Victorson
authors.forename: Denise
authors.initials: D
authors.lastname: Tate
authors.forename: Allen W
authors.initials: AW
authors.lastname: Heinemann
authors.forename: Dagmar
authors.initials: D
authors.lastname: Amtmann
authors.forename: David
authors.initials: D
authors.lastname: Cella
mesh_terms: D000328:Adult; D004185:Disability Evaluation; D005260:Female; D017144:Focus Groups; D006801:Humans; D007256:Information Systems; D008297:Male; D008875:Middle Aged; D017063:Outcome Assessment, Health Care; D011594:Psychometrics; D011788:Quality of Life; D020127:Recovery of Function; D012046:Rehabilitation / Q000592:standards*; D012650:Self Disclosure; D013119:Spinal Cord Injuries / Q000503:physiopathology / Q000523:psychology / Q000534:rehabilitation*; D011795:Surveys and Questionnaires