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NO002. Symptom burden in individuals with inflammatory bowel disease: A mixed methods study

D. Farrell, E. Savage, G. McCarthy, University College Cork, School of Nursing and Midwifery, Cork, Ireland

Background

Individuals with inflammatory bowel disease (IBD) experience a wide range of debilitating symptoms that potentially impose symptom burden. Although symptom burden has been a focus of much research across various chronic illnesses in recent years, there is a paucity of research on the symptom burden experiences of individuals with IBD. Furthermore, clinical guidelines by Mowat et al. (2011) highlight the area of symptoms as an under-researched topic.

Methods

An explanatory sequential mixed methods methodology was employed. A cross-sectional, correlational survey was first undertaken, aimed at measuring the symptom burden experiences of individuals with IBD. Symptom burden was assessed using a modified version of the Memorial Symptom Assessment Scale. A consecutive sample of 247 individuals were recruited at a routinue IBD Outpatients clinic in one Irish teaching hospital. A sequential qualitative, descriptive study was then conducted, aimed at explaining noteworthy quantitative findings. A criterion-related purposeful sample of seven participants took part in semi-structured interviews. Data were analysed using content analysis.

Results

Participants reported experiencing a median of 10 symptoms during the last week, however those with active disease experienced as many as 16 symptoms. Fatigue, bowel symptoms, IBS-type symptoms and worry were most burdensome. Participants with active disease had almost double mean total symptom burden scores than participants with inactive disease (M = 0.81 vs. 0.46, p < 0.001). Mean total psychological symptom burden was found to be significantly greater than mean total physical symptom burden (rho = 0.73, n = 247, p < 0.001). Self-reported disease control, gender, number of flare ups in the last two years, and smoking status were significant predictors of symptom burden, with self-reported disease control identified as the strongest predictor. Qualitative data revealed that participants described their symptom burden in terms of its impact on restricting aspects of daily activities and general life events. Psychological symptom burden was revealed as more problematic than physical symptom burden due to its constant nature, with physical and psychological symptoms described as occurring in a cyclical manner.

Conclusion

Individuals with IBD 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 broadened to encompass multiple physical and psychological symptoms. In addition, greater attention needs to be placed on psychological aspects of IBD care.