Self-reported symptom burden in individuals with inflammatory bowel disease

Background and Aims: Individuals with inflammatory bowel disease experience debilitating symptoms on a daily basis, but little is known about symptom burden in IBD. The objectives were to (i) identify the most prevalent symptoms and the average number of symptoms experienced; (ii) assess symptom frequency, severity and distress; and (iii) determine the most burdensome symptoms experienced by individuals with inflammatory bowel disease. Methods: A cross-sectional descriptive design was used to collect data in a single regional treatment centre in Ireland. A consecutive and unique sample of 247 individuals diagnosed with Crohn's disease and ulcerative colitis completed a modified disease-specific version of the Memorial Symptom Assessment Scale. Results: Participants reported experiencing a median of 10 symptoms during the last week, but as many as 16 symptoms were experienced by those with active disease. Of the symptoms experienced, lack of energy was identified as the most burdensome symptom. Bowel symptoms of urgency and diarrhoea and irritable bowel syndrome-type symptoms such as feeling bloated and flatulence were also problematic. Worry was ranked the most burdensome psychological symptom experienced. Symptom burden scores varied according to disease type and disease status, with significant differences found between those with active and inactive disease. Conclusions: Individuals with inflammatory bowel disease experience a considerable number of symptoms and are burdened by both physical and psychological symptoms, particularly during active disease. Healthcare professionals' focus of assessment needs to be broadened to encompass multiple symptoms. Greater attention needs to be given to fatigue and psychological symptoms.