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

 

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Zusammenfassung

Hintergrund: Als Merkmale einer guten Versorgung von Patientinnen und Patienten mit Morbus Crohn (MC) bzw. Colitis ulcerosa (CU) gelten regelmäßige, am Informationsbedarf der Betroffenen orientierte Schulungen sowie eine aktive Einbindung der Betroffenen in die Entscheidungsfindung.

Methodik: In einer multiregionalen Querschnittserhebung im Jahr 2005 beantworteten erwachsene Patientinnen und Patienten mit MC oder CU aus gastroenterologischen Praxen, Hochschulambulanzen und dem Mitgliederbestand der Deutschen Morbus Crohn/Colitis ulcerosa Vereinigung e. V. (DCCV) einen postalisch zugesandten Fragebogen. Erfragt wurden u. a. Informationswünsche zu 19 Themen, bevorzugte Informationsquellen (15 Quellen) sowie die präferierte eigene Rolle bei Entscheidungen (5 Beteiligungsweisen).

Ergebnisse: Analysiert wurden die Angaben von 1056 Respondern (65 % Frauen, im Mittel 42 Jahre, 58 % mit Morbus Crohn, 71 % DCCV-Mitglied). Am häufigsten werden mehr Informationen zu „Behandlungsalternativen“ (83 %), „Ursachen der Er-krankung“ (80 %) und „was ich selbst (noch) tun kann“ (79 %) gewünscht. 70 % präferieren die Information durch Fachärzte. Ein starkes Informationsbedürfnis (> 15 Themen) zeigen 27 %, unter ihnen vermehrt Jüngere, mit geringerer Schulbildung, erhöhter Krankheitsaktivität, kürzerer Krankheitsdauer (< 3 Jahre), erhöhten Angst- und Depressivitätswerten sowie DCCV-Mitglieder. Eine partizipative Entscheidungsfindung bevorzugen 68 %.

Diskussion: Die Daten unterstreichen das Bedürfnis der Befragten nach weiteren Informationen und können zur Ausgestaltung von Informations- und Schulungsangeboten verwendet werden.

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.

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