Comprehensive icf core set and icf core set-derived activities and participation questionnaire for patients with systemic sclerosis: Results of the SCISCIF study

Abstract

We aimed to develop a comprehensive International Classification of Functioning, Disability and Health (ICF) core set for systemic sclerosis (SSc) and to conceive an original ICF core set-derived questionnaire assessing activities and participation in patients with SSc. The development of the ICF comprehensive core set followed 2 steps. In the first step, meaningful concepts related to SSc were collected from 3 sources: focus groups of patients ( n = 13), experts ( n = 10), and literature (200 articles selected). In the second step, concepts were linked to the relevant ICF categories by 2 independent reviewers according to prespecified linking rules. Finally, understandable questions related to activities and participation were derived from the corresponding categories of the comprehensive ICF core set by a sociologist of the French ICF Research Branch. 146 ICF categories were collected from focus groups, 22 from experts and 48 from literature. After fusion of the sources and removal of duplicates, the comprehensive ICF core set included 169 ICF categories at the second level with 43 categories on body functions, 15 on body structures, 52 on activities and participation and 48 on environmental factors. A 65-item questionnaire was derived from the categories on activities and participation. We developed a comprehensive ICF core set that offers a relevant conceptual framework for SSc patients’ care and health policy. Using an original approach, we conceived an ICF core set-derived questionnaire assessing activities and participation. A brief version of the questionnaire is in development, and may enhance the usability of the ICF in clinical research and in patient's care. ClinicalTrials.gov identifier: NCT01848418 . First received: May 3, 2013. Last updated: June 27, 2016. Last verified: June 2016. French Ministry of Health (Programme Hospitalier de Recherche Clinique 2010, project no. AOR-10050).