Inflammatory bowel disease (IBD) is a chronic disease of unknown etiology. The disease occurs early in life and the burden of symptoms is significant. Patients need to perform self-care to handle their symptoms, but knowledge about what kind of self-care patients do is limited and these individuals need to learn how to manage the symptoms that arise. The aim of this study was to explore self-care among patients with IBD. Twenty adult patients with IBD, 25–66 years of age, were interviewed. Data were analyzed by performing a qualitative content analysis. Four categories with 10 subcategories emerged from the analysis of the interviews. The self-care patients perform consists of symptom recognition (subcategories: physiological sensations and psychological sensations), handling of symptoms (subcategories: adapting the diet, using medical treatment, stress management, and using complementary alternative medicine), planning life (subcategories: planning for when to do activities and when to refrain from activities), and seeking new options (subcategories: seeking knowledge and personal contacts). Self-care consists of symptom recognition, handling life through planning, and accommodating the existing situation with the ultimate goal of maintaining well-being. Being one step ahead facilitates living with IBD. A decision to actively participate in care of a chronic illness is a prerequisite for self-care. Healthcare professionals must consider patients' potential for and desire for self-care when giving advice on self-care activities. Doing so may help people better cope with IBD.

BACKGROUND: Patients with inflammatory bowel disease have lifelong needs to learn how to manage their symptoms and life situation. The range of actions that patients take in order to manage daily life and maintain health is referred to as self-care. Assessment of self-care in patients with inflammatory bowel disease could allow targeted support and education by health care professionals. There are no existing measures assessing self-care in patients with inflammatory bowel disease.

OBJECTIVES: The aim was to develop and evaluate the self-care questionnaire for assessment of self-care among patients with inflammatory bowel disease.

METHODS: Qualitative and quantitative methods were used to develop the inflammatory bowel disease self-care questionnaire. The development and evaluation process was performed in three phases: (1) item generation based on interviews with patients with inflammatory bowel disease (n = 20), (2) content validation in a panel of experts (n = 6) and patients (n = 100) assessed with the content validity index, cognitive interviews and quantifying and ranking the items to determine the usability of the questionnaire, and (3) final evaluation through a pilot study (n = 93) with test-retest evaluation (n = 50). An expert review group of three nurses and one physician continuously discussed the result during the development process.

RESULTS: A total of 91 patients with Crohn's disease and 102 with ulcerative colitis participated. The final self-care questionnaire consists of 22 items. Assessment of content validity indicated that the items were adequate and easy to understand. Test-retest reliability was confirmed with intraclass correlations above 0.6 after a three week interval, for all items except one.

CONCLUSION: An inflammatory bowel disease-specific self-care questionnaire was developed using structured methods. The evaluation indicated good validity and reliability. The questionnaire may be a useful tool to assess the ability of patients with inflammatory bowel disease to perform routine self-care.

Patients with inflammatory bowel disease often deal with daily symptom-related challenges. Little is known about patients’ self-care related to these symptoms. This descriptive, cross-sectional study aims to investigate self-care practices in adults with inflammatory bowel disease with a newly developed questionnaire, which was developed in Swedish and translated to English in a US sample of patients with inflammatory bowel disease. Further, it aims to determine if these practices are related to well-being. We recruited 67 adults, aged 21 to 80 years, with inflammatory bowel disease through ResearchMatch.org. Participants were invited to complete a web-based survey. The majority were women (72%) and most had a university level education (94%). The most common forms of self-care were: taking medication; adapting the diet; and self-monitoring of intestinal symptoms. Self-care maintenance and management practices were more common in participants who reported poor well-being, suggesting that self-care may be performed when patients are motivated by symptoms.