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N011 Living with inflammatory bowel disease: results from focus group

U. Chauhan*1, J. Popov2, D. Armstrong2, Y. Farbod2, S. L. Halder2, S. Kaasalainen3, J. K. Marshall2, F. Tse2, A. Wickson-Griffiths4, P. Moayyedi2

1McMaster University Medical Centre, Digestive Disease, Hamilton, Canada, 2McMaster University, Department of Gastroenterology, Hamilton, Canada, 3McMaster University, School Of Nursing, Hamilton, Canada, 4University of Regina, School of Nursing, Regina, Canada

Background

Inflammatory bowel disease (IBD) is a lifelong chronic inflammation presents early in life; the 2 main phenotypes are Crohn’s disease (CD) and ulcerative colitis (UC). The chronic relapsing nature of the disease results in lasting physical, psychological, and social stress. The primary objective of this study was to examine patients’ experiences and challenges associated with living with IBD.

Methods

Using a qualitative descriptive approach, data were collected using 5 focus group sessions, with a total of 17 individuals with diagnosis of IBD. The focus group sessions were audiotaped, transcribed, coded, and analysed, using thematic content analysis.

Results

Seventeen IBD patients with average age of 44 (25–77 years), with 15 CD and 2 UC; 8Fand 9M; and average disease duration of 19 years, were included. The main theme across the 5 focus groups was ‘IBD controls your life’. This was further divided into 4 sub-themes: (1) long duration from onset of symptoms to diagnosis; (2) poor experience with initial treatment; (3) lack of public knowledge of IBD requiring self-advocacy; and (4) managing the psychosocial, emotional and financial impact of disease. There were similar experiences and challenges, including lack of understanding from school and work force, were reported. Initial symptoms were dismissed as attention seeking in those diagnosed during teen years. Following diagnosis, patients’ main concern was choosing the right career path while effectively managing their IBD. However, advanced prearrangement of special accommodation for schoolwork, and time off from school and work for follow-up appointments continued to be a source of difficulty. Inability to hold a full-time employment, early retirement, and out-of-pocket expenses not covered by various funding agencies lead to financial struggles. Psychosocial effects were often associated with the inability to travel and attend social events because of IBD-induced constraints. This led to feelings of isolation, exclusion, and deep depression. An additional consensus was that current biological treatments are more effective and tolerable than the use of corticosteroids and surgical intervention, which may have caused additional health problems.

Conclusion

Despite the demographic differences, there were many common themes amongst the 5 focus groups. The general consensus was the greatest difficulties associated with living with IBD was garnering understanding from others and learning to live their lives around the disease. The main, unifying theme that emerged was that IBD plays a significant role in many different facets of the lives of the patients, and learning to manage and cope with the burden of symptoms and its effects on daily life becomes a lifelong process.