Construction of an ICF core set and ICF-based questionnaire assessing activities and participation in patients with systemic sclerosis

Abstract

Objectives To develop an International Classification of Functioning, Disability and Health (ICF) core set for SSc and to conceive a patient-centred ICF-based questionnaire assessing activities and participation in patients with SSc. Methods The construction of the ICF core set followed two steps. 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 one reviewer according to prespecified linking rules. Finally, patient-reported activities and participation categories of the ICF core set were translated into understandable questions. Results After linking concepts to ICF categories, 150 ICF categories were collected from focus groups, 22 from experts and 82 from literature. After fusion of the sources and removal of duplicates, the ICF core set included 164 categories: one at the first level, 157 at the second level and six at the third level, with 50 categories on body functions, 15 on body structures, 52 on activities and participation, and 47 on environmental factors. Patient-reported ICF categories on activities and participation were translated into a patient-centred ICF-based 65-item questionnaire. Conclusion The present study proposes an ICF core set that offers a conceptual framework for SSc patients’ care and health policy. Using a patient-centred approach, a patient-centred ICF-based questionnaire, the Cochin Scleroderma ICF-65 questionnaire, assessing activities and participation in patients with SSc, was conceived. Trial registration ClinicalTrials.gov, http://clinicaltrials.gov, NCT01848418.

Development of a new patient‐reported outcome measure to assess activities and participation in people with systemic sclerosis: the Cochin 17‐item Scleroderma Functional scale

“…[13][14][15] As reviewed by Pauling and colleagues, only seven of 13 PROMs (53Á8%) aiming at assessing people with SSc involved the target population in the item-and domain-generation stage of the instrument construction. 12,[16][17][18][19][20][21][22][23] We aimed to develop a new PROM assessing activities and participation in people with SSc, using an original ICF-based patient-centred self-administered 65-item provisional questionnaire 24 and prioritizing people's perspectives at all stages of instrument construction.…”

“…Development of the provisional ICF‐based 65‐item questionnaire has been reported . In a previous study, we developed a comprehensive ICF core set for SSc.…”

“…Development of the provisional ICF‐based 65‐item questionnaire has been reported . In a previous study, we developed a comprehensive ICF core set for SSc. Meaningful concepts were collected using data source triangulation from patients, experts and literature, and linked to the best‐matching ICF domains in accordance with prespecified standardized linking rules .…”

“…We aimed to develop a new PROM assessing activities and participation in people with SSc, using an original ICF‐based patient‐centred self‐administered 65‐item provisional questionnaire and prioritizing people's perspectives at all stages of instrument construction.…”

Opening the black box of non-pharmacological care in systemic sclerosis: a cross-sectional online survey of Dutch health professionals

“…Its worldwide incidence is an estimated 13 people per million per year, and its prevalence is approximately 200 people per million [1]. SSc has a heterogeneous and often progressive nature that involves skin, vessels, joints, and internal organs, and it significantly impairs patients' daily functioning and quality of life [2,3]. There is no effective treatment or cure for SSc yet, meaning that treatment is primarily aimed at controlling symptoms and maintaining quality of life [4].…”