The InSCI data model is grounded in the International Classification of Functioning, Disability and Health (ICF).
The questionnaire comprises categories outlined in the ‘Brief ICF Core Set for SCI, long-term context’ [2] and the ‘ICF Rehabilitation Set’ [3], encompassing essential information for various health conditions. It covers personal factors [4], lesion characteristics, and health and wellbeing appraisal. The 1st InSCI questionnaire drew questions from diverse tools aligning with the InSCI data model, comprising 125 questions.
The 2nd InSCI questionnaire, an extension of the 1st, retained the original data model with minor adjustments. The InSCI Scientific Committee and selected researchers modified it, incorporating feedback from the InSCI Steering Committee. The questionnaire, initially based on the international module of the 1st survey, expanded to 141 items, addressing new research areas and refining existing ones. Noteworthy changes include the replacement of certain items and the inclusion of topics like Covid-19, health utility, and physical activities.
The questionnaire design follows a harmonized item layout. A multidisciplinary team from the Coordinating Institute (Swiss Paraplegic Research) developed both paper-pencil and online versions, ensuring user-friendliness and adaptability across settings and languages.
References:
1. World Health Organization. International classification of functioning, disability and health: ICF. Geneva: World Health Organization; 2001.
2. Cieza A, Kirchberger I, Biering-Sorensen F, et al. ICF core sets for individuals with spinal cord injury in the long-term context. Spinal Cord 2010;48:305-12.
3. Prodinger B, Cieza A, Oberhauser C, Bickenbach J, Üstün TB, Chatterji S, Stucki G. Toward the ICF rehabilitation set: a minimal generic set of domains for rehabilitation as a health strategy. Arch Phys Med Rehabil 2016;97:875-84.
4. Geyh S, Muller R, Peter C, Bickenbach JE, Post MW, Stucki G, Cieza A. Capturing the psychologic-personal perspective in spinal cord injury. Am J Phys Med Rehabil 2011;90:S79-96.
The InSCI questionnaire:
InSCI_International_Module_2018.pdf
InSCI_International_Module_2023.pdf
