title: Ankylosing spondylitis self-help organisations - do members differ from non-members?
abstract: OBJECTIVE
  Joining a patient self-help organisation is recommended for patients with ankylosing spondylitis (AS). The objective was to compare AS patients who are members of a self-help organisation with non-members regarding disease specific and patient personality aspects, and make inferences on potential benefits of membership.
  
  
  METHODS
  A comprehensive questionnaire regarding demographics, smoking habits, acquisition of information about the disease, disease activity, functioning, patient satisfaction, treatment, sick leave, work disability and educational level was distributed to members of the German AS self-help organisation and to non-member AS patients.
  
  
  RESULTS
  In total, 1273 patients responded. Significant differences regarding age and disease duration led us to match members 2:1 to non-members. In the matched population (n=549), members had a higher level of education, felt more often well-informed about the disease, had less often physically demanding jobs, and smoked less than non-members. Members were more often treated with NSAIDs and less often with TNF-blockers suggesting more severe disease in non-members. While the level of disease activity was similar (BASDAI 4.1 vs. 4.2), members had a better functional status (BASFI 3.5 vs. 3.9) and significantly less days on sick leave during the last year (15.1 days vs. 31.2 days). Days on sick leave increased with increasing BASFI significantly more strikingly in non-members than in members.
  
  
  CONCLUSIONS
  AS patients who are members of an AS self-help organisation have a higher educational level and are much better informed about the disease. Inferences on disease outcome measures, however, are hampered by potential confounders.
authors.affiliation: Charité Universitätsmedizin Berlin, Campus Benjamin Franklin, Rheumatology, Hindenburgdamm 30, 12203 Berlin, Germany.
authors.forename: In-Ho
authors.initials: IH
authors.lastname: Song
authors.affiliation: Charité Universitätsmedizin Berlin, Campus Benjamin Franklin, Rheumatology, Hindenburgdamm 30, 12203 Berlin, Germany; Klinikum Ernst von Bergmann, Charlottenstr. 72, 14467 Potsdam, Germany.
authors.forename: Cornelia
authors.initials: C
authors.lastname: Brenneis
authors.affiliation: German Ankylosing Spondylitis Society (Deutsche Vereinigung Morbus Bechterew, DVMB), 97421 Schweinfurt, Germany.
authors.forename: Ludwig
authors.initials: L
authors.lastname: Hammel
authors.affiliation: German Ankylosing Spondylitis Society (Deutsche Vereinigung Morbus Bechterew, DVMB), 97421 Schweinfurt, Germany.
authors.forename: Ernst
authors.initials: E
authors.lastname: Feldtkeller
authors.affiliation: Deutsches Rheuma-Forschungszentrum (DRFZ), Charitéplatz 1, 10117 Berlin, Germany.
authors.forename: Joachim
authors.initials: J
authors.lastname: Listing
authors.affiliation: Charité Universitätsmedizin Berlin, Campus Benjamin Franklin, Rheumatology, Hindenburgdamm 30, 12203 Berlin, Germany.
authors.forename: Joachim
authors.initials: J
authors.lastname: Sieper
authors.affiliation: Charité Universitätsmedizin Berlin, Campus Benjamin Franklin, Rheumatology, Hindenburgdamm 30, 12203 Berlin, Germany; Klinik für Innere Medizin und Rheumatologie, Klinikum Bielefeld Rosenhöhe, An der Rosenhöhe 27, 33647 Bielefeld, Germany. Electronic address: martin.rudwaleit@klinikumbielefeld.de.
authors.forename: Martin
authors.initials: M
authors.lastname: Rudwaleit
mesh_terms: D000328:Adult; D000368:Aged; D004522:Educational Status; D005260:Female; D006801:Humans; D008297:Male; D008875:Middle Aged; D010353:Patient Education as Topic; D012657:Self-Help Groups / Q000458:organization & administration*; D013167:Spondylitis, Ankylosing / Q000628:therapy*; D011795:Surveys and Questionnaires
keywords: ASAS; Ankylosing spondylitis; Coping; Patient self-help group; Recommendations