Assessing Complex Health Problems of Patients with IBD - First Step to Patient Activation

Background: Health care for inflammatory bowel diseases (IBD), to be comprehensive, takes a broad range of patients' somatic and psychosocial problems into account. Patients should be actively involved in health-care planning and organisation. Methods: 431 adult patients with Crohn's disease (50 %) or ulcerative colitis participated in a postal questionnaire survey; 6 months apart it twice assessed the patients' individual problem profiles. The results of the assessment were back-reported to each patient combined with targeted (though standardised) recommendations for future care. This publication is the first of a series. It presents the basic study design, describes the prevalence of 16 psychosocial problem domains and analyses their association with socio-demographic and disease variables. Results: Participants had a mean age of 46 years; 61 % were female; 57 % in remission (GIBDI <= 3). The most prevalent problems reported addressed sexual impairments (27 %), high stress (26 %) and depression (21 %). 27 % of the respondents did not report any psychosocial problem. One in five (21 %) described highly complex problem profiles (>= 5 active problems) combined with a mean of 28 disability days within the past 3months. Complex psychosocial profiles were associated with active disease, Crohn's disease and low educational level. Conclusions: IBD patients show a highly variable spectrum of psychosocial problems. Their number is closely associated with disease activity and a social status variable (school education). The gradient could complicate efforts to increase patient participation in care and to enhance self-management.