SAT0270 COMPREHENSIVE ICF CORE SET AND ICF-BASED QUESTIONNAIRE ASSESSING ACTIVITIES AND PARTICIPATION IN PATIENTS WITH SYSTEMIC SCLEROSIS: THE SCISCIF STUDY

Abstract

Background: Recent guidelines regarding systemic sclerosis (SSc) emphasized the need of measuring functioning along with organ-specific measures, pointing out the importance of patient-reported outcome measures (1). The International Classification of Functioning, Disability and Health (ICF) endorsed by the WHO in 2001 set a unified language covering all dimensions of human functioning, including body structures, body functions, activities and participation and environmental factors. Objectives: To develop a comprehensive ICF core set for SSc and to conceive a patient-centered ICF-based questionnaire assessing activities and participation in patients with SSc. Methods: The development of the ICF comprehensive core set followed 2 steps (2). In the first step, meaningful concepts related to SSc were collected using data source triangulation from patients (N=18), experts (N=10) and literature (N=174 articles). In the second step, concepts were linked to the best-matching ICF categories by 2 independent reviewers according to prespecified linking rules (3). Finally, patient-reported activities and participation categories of the comprehensive ICF core set were translated into understandable questions Results: After linking concepts to ICF codes, 151 ICF categories were collected from focus groups, 22 from experts and 82 from literature. After fusion of the sources and removal of duplicates, the comprehensive ICF core set included 165 categories: 1 at the first level, 158 at the second level, 6 at the third level, with 50 categories on body functions, 15 on body structures, 53 on activities and participation and 47 on environmental factors. Patient-reported ICF categories on activities Conclusion: We developed a comprehensive ICF core set that offers a conceptual framework for SSc patients’ care and health policy. Using a patient-centered approach, we conceived a patient-centered ICF-based questionnaire, the Cochin Scleroderma ICF-65 questionnaire, assessing activities and participation in patients with SSc.