Zu welchen Themen wünschen Patientinnen und Patienten mit Morbus Crohn oder Colitis ulcerosa mehr Informationen und welche eigene Rolle bevorzugen sie bei medizinischen Behandlungsentscheidungen? Ergebnisse einer Betroffenenbefragung in Deutschland

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 alternativeso" (83 %), "causes of diseaseo" (80 %) and "what can I (still) do by myselfo" (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.