Abstract
Introduction: Self-care is needed for patients living with inflammatory bowel disease so that they can manage symptoms in the context of activities of daily living. The objective was to explore self-care in relation to disease activity and health-related quality of life in patients with inflammatory bowel disease. Methods: We used a cross-sectional exploratory design and a total of 234 patients with inflammatory bowel disease participated. Disease specific measurements was used as, a newly developed self-care questionnaire, Harvey Bradshaw Index, the Simple Clinical Colitis Activity Index and Short Health Scale. Results: The results revealed that patients reported a high frequency of self-care maintenance as medication adherence, diet adaptation, planning the day and avoiding activities, self-care monitoring in symptom recognition and self-care management in managing stress and managing sleep. Higher disease activity was related to higher self-care activity. Compared to patients with ulcerative colitis, those with Crohn’s disease planned their day to a higher degree when their bowel symptoms interfered with daily life. Disease activity and avoiding activities decreased their health-related quality of life. Conclusion: Self-care was positively associated to higher disease activity. Higher disease activity highlight self-care maintenance as planning the day and avoiding activities in daily life what in turn decrease health-related quality of life. Regular discussions on symptoms in relation to self-care is of great importance for patients to adjust their daily activities.
Highlights
Self-care is needed for patients living with inflammatory bowel disease so that they can manage symptoms in the context of activities of daily living
Higher disease activity was related to higher self-care activity
The diseases are heterogenous in their clinical presentation depending on the degree of disease activity, extent and location of bowel inflammation and presence of intestinal complications or extraintestinal manifestations [3, 4]
Summary
Self-care is needed for patients living with inflammatory bowel disease so that they can manage symptoms in the context of activities of daily living. The objective was to explore self-care in relation to disease activity and health-related quality of life in patients with inflammatory bowel disease. The incidence and prevalence of IBD has increased worldwide, and approximately three million people in European countries live with these conditions [1]. For these patients, the disease activity and severity vary but for some patients the symptoms are debilitating, such as abdominal pain and bloody diarrhea, causing lifelong need for healthcare and contacts with healthcare professionals. The disease course varies between individuals, but usually periods in remission are interrupted by flare-ups unless maintenance treatment can control the disease [4]
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