Abstract

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.