title: Development and assessment of a community follow-up questionnaire for the Rick Hansen spinal cord injury registry.
abstract: OBJECTIVE
  To develop a comprehensive community follow-up questionnaire for participants enrolled in the Rick Hansen Spinal Cord Injury Registry (RHSCIR).
  
  
  METHODS
  Development and preliminary assessment of measurement properties (reliability and validity) of instruments used during a community follow-up and aligned with the International Classification of Functioning, Disability and Health (ICF).
  
  
  METHODS
  General community setting.
  
  
  METHODS
  People with spinal cord injury (N=50) living in the community.
  
  
  METHODS
  Not applicable.
  
  
  METHODS
  A comprehensive follow-up questionnaire, referred to as the RHSCIR Community Follow-up Questionnaire Version 2.0 (CFQ-V2.0), includes 8 instruments. Four new instruments were developed, 2 existing instruments were modified, and 2 previously published instruments were included.
  
  
  RESULTS
  Intra- and interrater reliability statistics (Gwet's AC1) support the measurement properties of the new and modified instruments. Correlations between new and existing instruments and between groups based on the severity of injury support the construct validity of the secondary complications and person-perceived participation instruments.
  
  
  CONCLUSIONS
  The RHSCIR CFQ-V2.0 is a comprehensive community follow-up questionnaire that aligns to the ICF. Initial study results suggest that it covers all relevant aspects of community living, and the measurement properties are promising.
authors.affiliation: Centre for Interdisciplinary Research in Rehabilitation and Social Integration, Quebec City, Quebec, Canada. Luc.Noreau@rea.ulaval.ca
authors.forename: Luc
authors.initials: L
authors.lastname: Noreau
authors.forename: John
authors.initials: J
authors.lastname: Cobb
authors.forename: Lise M
authors.initials: LM
authors.lastname: Bélanger
authors.forename: Marcel F
authors.initials: MF
authors.lastname: Dvorak
authors.forename: Jean
authors.initials: J
authors.lastname: Leblond
authors.forename: Vanessa K
authors.initials: VK
authors.lastname: Noonan
mesh_terms: D000328:Adult; D002170:Canada; D003266:Continuity of Patient Care; D004777:Environment; D005260:Female; D006304:Health Status; D006801:Humans; D038801:International Classification of Diseases; D008297:Male; D008875:Middle Aged; D015588:Observer Variation; D011788:Quality of Life; D020127:Recovery of Function; D012042:Registries; D015203:Reproducibility of Results; D012111:Residence Characteristics; D012959:Socioeconomic Factors; D013119:Spinal Cord Injuries / Q000453:epidemiology / Q000534:rehabilitation*; D011795:Surveys and Questionnaires; D015599:Trauma Severity Indices
keywords: CFQ-V1.0; CFQ-V2.0; CHIEF; Community Follow-up Questionnaire Version 1.0; Community Follow-up Questionnaire Version 2.0; Craig Hospital Inventory of Environmental Factors; Disabled persons; ICF; IPA; Impact on Autonomy and Participation Questionnaire; International Classification of Functioning, Disability and Health; LiSat-11; Life Satisfaction-11; PDAQ; PROMIS; Patient Reported Outcome Measurement Information System; Person-Perceived Participation in Daily Activities Questionnaire; Psychometrics; QOL; Quality of life; RHSCIR; Rehabilitation; Rick Hansen Spinal Cord Injury Registry; SCI; SCI-AQ; SCI-EQ Suppl; SCI-HQ: Comorb; SCI-HQ: Compl; SCI-SCS; SWLS; Satisfaction With Life Scale; Social participation; Spinal Cord Injury Activity Questionnaire; Spinal Cord Injury Environmental Questionnaire Supplement; Spinal Cord Injury Health Questionnaire: Comorbidities; Spinal Cord Injury Health Questionnaire: Secondary Complications; Spinal Cord Injury Secondary Complications Scale; Spinal cord injuries; Treatment outcomes; quality of life; spinal cord injury