title: Concepts of functioning and health important to people with systemic sclerosis: a qualitative study in four European countries.
abstract: 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.
  
  
  METHODS
  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.
  
  
  CONCLUSIONS
  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.
authors.affiliation: Department of Internal Medicine III, Division of Rheumatology, Medical University of Vienna, Waehringer Guertel 18-20, 1090 Vienna, Austria. tanja.stamm@meduniwien.ac.at
authors.forename: Tanja A
authors.initials: TA
authors.lastname: Stamm
authors.forename: Malin
authors.initials: M
authors.lastname: Mattsson
authors.forename: Carina
authors.initials: C
authors.lastname: Mihai
authors.forename: Juliane
authors.initials: J
authors.lastname: Stöcker
authors.forename: Alexa
authors.initials: A
authors.lastname: Binder
authors.forename: Bettina
authors.initials: B
authors.lastname: Bauernfeind
authors.forename: Georg
authors.initials: G
authors.lastname: Stummvoll
authors.forename: Gunvor
authors.initials: G
authors.lastname: Gard
authors.forename: Roger
authors.initials: R
authors.lastname: Hesselstrand
authors.forename: Gunnel
authors.initials: G
authors.lastname: Sandqvist
authors.forename: Oana
authors.initials: O
authors.lastname: Draghicescu
authors.forename: Ana Maria
authors.initials: AM
authors.lastname: Gherghe
authors.forename: Malina
authors.initials: M
authors.lastname: Voicu
authors.forename: Klaus P
authors.initials: KP
authors.lastname: Machold
authors.forename: Oliver
authors.initials: O
authors.lastname: Distler
authors.forename: Josef S
authors.initials: JS
authors.lastname: Smolen
authors.forename: Carina
authors.initials: C
authors.lastname: Boström
mesh_terms: D000203:Activities of Daily Living; D000328:Adult; D000368:Aged; D000369:Aged, 80 and over; D001317:Austria; D004185:Disability Evaluation; D004777:Environment; D005260:Female; D017144:Focus Groups; D006801:Humans; D008297:Male; D008875:Middle Aged; D036301:Qualitative Research; D012383:Romania; D012595:Scleroderma, Systemic / Q000503:physiopathology / Q000523:psychology / Q000534:rehabilitation*; D013548:Sweden; D013557:Switzerland