title: [Preference of patients with inflammatory bowel disease regarding information and shared decision-making: results from a cross-sectional survey in Germany].
abstract: BACKGROUND
  Evidence-based and consented pathways for patients with inflammatory bowel diseases (IBD, Crohn's disease, ulcerative colitis) call for tailored education programmes to foster shared decision-making and patient self-management. Their preferences should be taken into account.
  
  
  METHODS
  In 2005 a cross-sectional postal questionnaire survey was conducted in different regions of Germany. Adult patients with ulcerative colitis (UC) or Crohn's disease (CD) were recruited from specialised gastroenterological practices, university outpatient clinics and the member registry of the relevant patient organisation DCCV. They returned a questionnaire including (inter)nationally established scales (e. g., HADS) as well as questions on their information needs, preferred information sources and their role in decision-making.
  
  
  RESULTS
  Data of 1056 responders could be analysed (65 % female; CD: 58 %; DCCV member: 71 %). The mean age of the patients was 42 (SD 12,8) years. Almost all patients wanted more information on "treatment alternatives" (83 %), "causes of disease" (80 %) and "what can I (still) do by myself" (79 %). 27 % of the patients asked for more information on 15 or more of overall 19 topics. The high information need was significantly associated with HADS potential depressive disorder (score > 8) and HADS probable anxiety disorder (score > 10). Most IBD patients (70 %) obviously regard their physicians as the most desirable source of information, 67 % prefer an active involvement in clinical decision-making.
  
  
  CONCLUSIONS
  The data demonstrate high information needs of IBD patients and may serve in the planning of future educational programmes.
authors.affiliation: Evidenzbasierte Medizin und Leitlinien, Ärztliches Zentrum für Qualität in der Medizin, Berlin.
authors.forename: S
authors.initials: S
authors.lastname: Conrad
authors.forename: A
authors.initials: A
authors.lastname: Hüppe
authors.forename: H
authors.initials: H
authors.lastname: Raspe
mesh_terms: D000328:Adult; D003430:Cross-Sectional Studies; D003657:Decision Making; D005260:Female; D005858:Germany / Q000453:epidemiology; D006801:Humans; D015212:Inflammatory Bowel Diseases / Q000453:epidemiology* / Q000628:therapy*; D008297:Male; D010353:Patient Education as Topic / Q000706:statistics & numerical data*; D010358:Patient Participation / Q000706:statistics & numerical data*; D010817:Physician-Patient Relations