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Concepts of functioning and health important to people with systemic sclerosis: a qualitative study in four European countries
Department of Internal Medicine III, Division of Rheumatology, Medical University of Vienna.
Luleå University of Technology, Department of Health Sciences, Health and Rehab.
Internal Medicine and Rheumatology Department, Carol Davila University of Medicine and Pharmacy, Cantacuzino Hospital, Bucharest.
Department of Rheumatology and Institute for Physical Medicine, University Hospital Zurich.
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2011 (English)Conference paper, Poster (Refereed)
Abstract [en]

Objective To 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. Method A 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. Results 63 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. Conclusion Concepts 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.

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URN: urn:nbn:se:ltu:diva-39101Local ID: db734d02-144c-4bf5-97bb-ef39c921b165OAI: diva2:1012610
Annual European Congress of Rheumatology : 25/05/2011 - 28/05/2011
Godkänd; 2011; 20150310 (andbra)Available from: 2016-10-03 Created: 2016-10-03 Last updated: 2016-12-06Bibliographically approved

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