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Background: Patients with inflammatory bowel diseases (IBD) experience various bodily and psychosocial impairments. We report data from a recent German questionnaire survey., Methods: The cross-sectional study was conducted in 2005 as a postal survey in three regions in West (Kiel and Luebeck, Regensburg) and East (Halle/Saale) Germany. Patients with Crohn's disease and ulcerative colitis (CD, UC) were recruited from specialized gastroenterological practices, university outpatient clinics, and the registry of a prominent patient organization (DCCV). The questionnaire followed the concept and distinctions of WHO's ICF and incorporated (inter-)nationally established items and scales (i. a. HADS)., Results: Survey responders (n = 1083, CD: 58 %, 65 % female) had a mean age of 42 years with an average disease duration of 13 years. 25 % suffered severely or very severely from their disease in general, one third stated at least severe fatigue, and 52 % felt profoundly affected by stress. A clinically relevant anxiety was observed in 24 % with no relevant difference between males and females. Depression was more common in men (29 %) than in women (21 %). Restrictions in social participation (family life, work) were actually prominent in at least a quarter of the responders., Conclusions: Beside somatic ailments typical for the disease, patients also reported multiple psychosocial impairments and participation restrictions and should hence profit from a multi- and interdisciplinary team care.

Crohn's disease and ulcerative colitis are diseases characterized by remission and relapse, an early age of onset and restrictions on activities and participation. IBD patients need a comprehensive, easily accessible and problem-oriented health care. This requires the integration and coordination of different health care sectors, medical and non-medical professionals, social and health care facilities and funding agencies. The pathways to guide patients through integrated health care were based on clinical considerations, interviews with patients and specialists, systematically searched evidence and results of a questionnaire survey. Within a systematic assessment-assignment approach relevant problems were identified and subsequently related to different medical and non-medical professionals, health care services and medical sectors. The pathways further imply (1) medical care according to evidence-based guideline recommendations, (2) patient education programs to foster shared decision making and self-management and (3) suggestions for further research. The pathways were consented in a consensus conference using nominal group process methods. Their feasibility and effect will be evaluated within a regional implementation project.