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Canadian Journal of Gastroenterology and Hepatology
Volume 29, Issue 2, Pages 77-84
http://dx.doi.org/10.1155/2015/815820
Original Article

Living with Inflammatory Bowel Disease: A Crohn’s and Colitis Canada Survey

Helen M Becker,1,2,3 Daniel Grigat,1,4 Subrata Ghosh,1,2,3,4 Gilaad G Kaplan,1,3,5 Levinus Dieleman,1,6 Eytan Wine,1,7 Richard N Fedorak,1,6 Aida Fernandes,8 Remo Panaccione,1,2 and Herman W Barkema1,2,3,5

1Alberta Inflammatory Bowel Disease Consortium, Faculty of Veterinary Medicine, University of Calgary, Calgary, Canada
2Department of Medicine, Cumming School of Medicine, University of Calgary, Calgary, Canada
3Department of Production Animal Health, Faculty of Veterinary Medicine, University of Calgary, Calgary, Canada
4Alberta Health Services, Cumming School of Medicine, University of Calgary, Calgary, Canada
5Department of Community Health Sciences, Cumming School of Medicine, University of Calgary, Calgary, Canada
6Department of Medicine, University of Alberta, Edmonton, Alberta, Canada
7Department of Pediatrics, Faculty of Medicine, University of Alberta, Edmonton, Alberta, Canada
8Crohn’s and Colitis Canada, Toronto, Ontario, Canada

Received 7 November 2014; Accepted 5 December 2014

Copyright © 2015 Hindawi Publishing Corporation. This is an open access article distributed under the Creative Commons Attribution License, which permits unrestricted use, distribution, and reproduction in any medium, provided the original work is properly cited.

Abstract

BACKGROUND: Despite improvements in therapies for inflammatory bowel diseases (IBDs), patient quality of life continues to be significantly impacted.

OBJECTIVE: To assess the impact of IBD on patients and families with regard to leisure, relationships, mental well-being and financial security, and to evaluate the quality and availability of IBD information.

METHODS: An online survey was advertised on the Crohn’s and Colitis Canada website, and at gastroenterology clinics at the University of Alberta Hospital (Edmonton, Alberta) and University of Calgary Hospital (Calgary, Alberta).

RESULTS: The survey was completed by 281 IBD patients and 32 family members. Among respondents with IBD, 64% reported a significant or major impact on leisure activities, 52% a significant or major impact on interpersonal relationships, 40% a significant or major impact on financial security, and 28% a significant or major impact on planning to start a family. Patient information needs emphasized understanding disease progression (84%) and extraintestinal symptoms (82%). There was a strong interest in support systems such as health care insurance (70%) and alternative therapies (66%). The most common source of information for patients was their gastroenterologist (70%); however, most (70%) patients preferred to obtain their information from the Crohn’s and Colitis Canada website.

CONCLUSIONS: The impact of IBD on interpersonal relationships and leisure activities was significant among IBD patients and their families. Understanding the disease, but also alternative treatment options, was of high interest. Currently, there is a discrepancy between interest in information topics and their availability. Respondents reported a strong desire to obtain information regarding disease progression, especially extraintestinal symptoms.