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A Structured Approach to Capture the Lived Experience of Spinal Cord Injury: Data Model and Questionnaire of the International Spinal Cord Injury Community Survey.
Journal article

A Structured Approach to Capture the Lived Experience of Spinal Cord Injury: Data Model and Questionnaire of the International Spinal Cord Injury Community Survey.

  • Fekete C From the Swiss Paraplegic Research, Guido A. Zäch Institute, Nottwil, Switzerland (CF, MWMP, JB, BP, MS, GS); University of Groningen, University Medical Center Groningen, Department of Rehabilitation Medicine, Center for Rehabilitation, Groningen, the Netherlands (MWMP); Brain Center Rudolf Magnus and Center of Excellence in Rehabilitation Medicine, University Medical Center Utrecht and De Hoogstraat, Utrecht, the Netherlands (MWMP); Department of Health Sciences and Health Policy, University of Lucerne, Lucerne, Switzerland (JB, BP, GS); ICF Research Branch, Guido A. Zäch Institute, Nottwil, Switzerland, a cooperation partner within the WHO Collaborating Centre for the Family of International Classifications (at DIMDI) (JB, BP, MS, GS); and John Walsh Centre for Rehabilitation Research, Kolling Institute, Northern Sydney Local Health District and Sydney Medical School Northern, University of Sydney, Sydney, Australia (JM).
  • Post MW
  • Bickenbach J
  • Middleton J
  • Prodinger B
  • Selb M
  • Stucki G
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  • 2017-01-07
Published in:
  • American journal of physical medicine & rehabilitation. - 2017
Activities of Daily Living
Disability Evaluation
Disabled Persons
Health Surveys
Humans
International Classification of Functioning, Disability and Health
Observer Variation
Reproducibility of Results
Spinal Cord Injuries
Surveys and Questionnaires
English The International Spinal Cord Injury (InSCI) community survey has been developed to collect internationally comparable data on the lived experience of persons with spinal cord injury (SCI) in all 6 WHO regions. The InSCI survey provides a crucial first step to generate evidence on functioning, health maintenance, and subjective well-being in persons with SCI globally. A major challenge in setting up the InSCI community survey was to develop a data model and questionnaire that comprehensively captures what matters to people and, at the same time, is feasible and parsimonious in terms of participant's burden. This paper outlines the components of the InSCI data model and presents the question selection to operationalize the data model along the 4 guiding principles of efficiency, feasibility, comparability, and truth and discrimination. The data model consists of 6 components operationalized with 125 questions including functioning (n = 28 body functions and structures; n = 42 activities and participation), contextual factors (n = 26 environmental; n = 19 personal factors), lesion characteristics (n = 2), and appraisal of health and well-being (n = 8). The InSCI questionnaire presents an efficient and feasible solution with satisfying comparability to other populations; however, its validity and reliability still needs to be confirmed.
Language
  • English
Open access status
closed
Identifiers
Persistent URL
https://sonar.ch/global/documents/39516
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