Concepts of functioning and health important to people with systemic sclerosis: a qualitative study in four European countries

Abstract

ObjectiveTo describe the experiences of people with systemic sclerosis (SSc) in different European countries of functioning and health and to link these experiences to the WHO International Classification of Functioning, Disability and Health (ICF) to develop a common understanding from a bio-psycho-social perspective.MethodA qualitative multicentre study with focus-group interviews was performed in four European countries: Austria, Romania, Sweden and Switzerland. The qualitative data analysis followed a modified form of ‘meaning condensation’ and the concepts that emerged in the analysis were linked to the ICF.Results63 people with SSc participated in 13 focus groups. In total, 86 concepts were identified. 32 (37%) of these were linked to the ICF component body functions and structures, 21 (24%) to activities and participation, 26 (30%) to environmental factors, 6 (7%) to personal factors and 1 (1%) to the health condition itself. 19 concepts (22%) were identified in all four countries and included impaired hand function, household activities, paid work, drugs, climate and coldness, support from others and experiences with healthcare institutions, non-pharmacological treatment, social security and benefits.ConclusionConcepts identified in all four countries could be used for guiding clinical assessment, as well as interdisciplinary team care and rheumatological rehabilitation for patients with SSc. For a full understanding of the aspects of the disease that were most relevant to people with SSc, people with SSc from multiple countries needed to be involved.

The use of the International Classification of Functioning, Disability and Health to understand the health and functioning experiences of people with chronic conditions from the person perspective: a systematic review

“…Nearly half of the studies (n ¼ 17) linked the participant responses to the high level categories of the ICF by way of specific linking rules [48,[51][52][53][54]56,64,66,68,[76][77][78]89,90,[92][93][94]. Linking rules were published in 2002 to standardise the process of connecting outcome measures to the ICF [95] and they were updated in 2005 to link technical and clinical measures and health interventions to the framework [96].…”

“…Eight of these studies used six common questions based on the ICF components [48,51,56,77,78,90,92,93] (see Appendix A for questions). All studies with the exception of one [91] used the ICF to analyse the participants' responses by linking them to the broad components or more specific categories of the ICF.…”

“…Just under half the studies used the ICF during data collection by asking the participants open-ended questions reflecting the ICF components [48,50,51,53,55,56,60,63,[76][77][78][88][89][90][91][92] or asking for facilitators and barriers related to each component [67] (Table 4). Eight of these studies used six common questions based on the ICF components [48,51,56,77,78,90,92,93] (see Appendix A for questions).…”

“…Nineteen of the 37 studies chose not to go down the path of coding and conceptualised participant responses more broadly within the ICF components [34,49,50,55,[57][58][59][60][61][62][63]65,67,80,82,[97][98][99][100]. Twelve of the 37 studies used an inductive approach to content analysis which involved analysing the responses to identify themes before linking the themes to the ICF components [ [34,48,49,50,77] 5 Multiple Sclerosis [53,93,94,99] 4 Stroke [68,97,100] 3 Motor Neurone Disease [64] 1 Guillain-Barre Syndrome [52] 1 Parkinson's Disease [65] 1 Systemic Sclerosis [78] 1 Systemic Lupus Erythematosus [76] 1 Acquired Brain Injury [67] 1 Cerebral Palsy [54] 1 Huntington's Disease [55] 1 ICF to understand person perspective: a review 661…”

“…Five studies collected data from more than one country [53,56,[76][77][78]. Two of these studies compared data across countries [53,78], which illustrates the use of the ICF for comparing health status data across population groups, while the other three studies combined data from each country before linking the information to the ICF [56,76,77]. Kirchberger collected data in six countries covering six WHO world regions -Africa, Americas, Eastern Mediterranean, Europe, South-East Asia and Western Pacific [79].…”