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The Challenges of Living with Inflammatory Bowel Disease: Summary of a Summit on Patient and Healthcare Provider Perspectives


Affiliations
1 Judy Bray Consulting, 125 Grove Avenue, Ottawa, ON, Canada
2 Crohn’s and Colitis Canada, 600-60 Street Clair Avenue East, Toronto, ON, Canada
3 Mount Sinai Centre for Inflammatory Bowel Disease, Mount Sinai Hospital, Department of Medicine, University of Toronto, 600 University Avenue, Toronto, ON, Canada
4 Division of Gastroenterology & Nutrition, IWK Health Centre, Department of Pediatrics, Dalhousie University, 5980 University Avenue, Halifax, NS, Canada
5 University of Calgary Inflammatory Bowel Disease Clinic, Foothills Medical Centre, 1403-29 Street NW, Calgary, AB, Canada
6 Division of Gastroenterology, St Joseph’s Healthcare Hamilton, 50 Charlton Avenue East, Hamilton, ON, Canada
7 Division of Gastroenterology,Women’s College Hospital, 76 Grenville Street, Toronto, ON, Canada
8 Institute for Clinical Evaluative Sciences, G1 06, 2075 Bayview Avenue, Toronto, ON, Canada
 

Canada has one of the highest rates of inflammatory bowel disease (IBD) and the disease represents a significant health, social, and economic burden.There is currently no cure for IBD, although earlier diagnosis and new therapies have improved the overall health outcomes and quality of life for patients. Crohn's and Colitis Canada is Canada's only national, volunteer-based charity dedicated to finding cures for IBD and improving the lives of those affected, through research, education, patient programs, advocacy, and increased awareness. On April 30, 2015, Crohn's and Colitis Canada hosted the "Patient and Healthcare Professional Summit on the Burden of Disease in IBD" to obtain a deeper understanding of the unmet needs of IBD patients and their caregivers. Through personal vignettes, patients articulated a pressing need to increase understanding of the challenges faced by people suffering from IBD among both health care professionals and the general public, develop best practices for navigating life transitions and addressing the unique challenges faced by children with IBD, and provide equitable access to appropriate, effective, and affordable treatments. The recommendations that emerged from the summit will inform about efforts to increase public awareness, inform about advocacy strategies, and contribute to the development of research priorities.
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  • The Challenges of Living with Inflammatory Bowel Disease: Summary of a Summit on Patient and Healthcare Provider Perspectives

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Authors

Judith Bray
Judy Bray Consulting, 125 Grove Avenue, Ottawa, ON, Canada
Aida Fernandes
Crohn’s and Colitis Canada, 600-60 Street Clair Avenue East, Toronto, ON, Canada
Geoffrey C. Nguyen
Mount Sinai Centre for Inflammatory Bowel Disease, Mount Sinai Hospital, Department of Medicine, University of Toronto, 600 University Avenue, Toronto, ON, Canada
Anthony R. Otley
Division of Gastroenterology & Nutrition, IWK Health Centre, Department of Pediatrics, Dalhousie University, 5980 University Avenue, Halifax, NS, Canada
Joan Heatherington
University of Calgary Inflammatory Bowel Disease Clinic, Foothills Medical Centre, 1403-29 Street NW, Calgary, AB, Canada
Jennifer Stretton
Division of Gastroenterology, St Joseph’s Healthcare Hamilton, 50 Charlton Avenue East, Hamilton, ON, Canada
Natasha Bollegala
Division of Gastroenterology,Women’s College Hospital, 76 Grenville Street, Toronto, ON, Canada
Eric I. Benchimol
Institute for Clinical Evaluative Sciences, G1 06, 2075 Bayview Avenue, Toronto, ON, Canada

Abstract


Canada has one of the highest rates of inflammatory bowel disease (IBD) and the disease represents a significant health, social, and economic burden.There is currently no cure for IBD, although earlier diagnosis and new therapies have improved the overall health outcomes and quality of life for patients. Crohn's and Colitis Canada is Canada's only national, volunteer-based charity dedicated to finding cures for IBD and improving the lives of those affected, through research, education, patient programs, advocacy, and increased awareness. On April 30, 2015, Crohn's and Colitis Canada hosted the "Patient and Healthcare Professional Summit on the Burden of Disease in IBD" to obtain a deeper understanding of the unmet needs of IBD patients and their caregivers. Through personal vignettes, patients articulated a pressing need to increase understanding of the challenges faced by people suffering from IBD among both health care professionals and the general public, develop best practices for navigating life transitions and addressing the unique challenges faced by children with IBD, and provide equitable access to appropriate, effective, and affordable treatments. The recommendations that emerged from the summit will inform about efforts to increase public awareness, inform about advocacy strategies, and contribute to the development of research priorities.