title: The Challenges of Living with Inflammatory Bowel Disease: Summary of a Summit on Patient and Healthcare Provider Perspectives.
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.
authors.affiliation: Judy Bray Consulting, 125 Grove Avenue, Ottawa, ON, Canada K1S 3A9.
authors.forename: Judith
authors.initials: J
authors.lastname: Bray
authors.affiliation: Crohn's and Colitis Canada, 600-60 Street Clair Avenue East, Toronto, ON, Canada M4T 1N5.
authors.forename: Aida
authors.initials: A
authors.lastname: Fernandes
authors.affiliation: Mount Sinai Centre for Inflammatory Bowel Disease, Mount Sinai Hospital, Department of Medicine, University of Toronto, 600 University Avenue, Toronto, ON, Canada M5G 1X5; Institute for Clinical Evaluative Sciences, G1 06, 2075 Bayview Avenue, Toronto, ON, Canada M4N 3M5.
authors.forename: Geoffrey C
authors.initials: GC
authors.lastname: Nguyen
authors.affiliation: Division of Gastroenterology & Nutrition, IWK Health Centre, Department of Pediatrics, Dalhousie University, 5980 University Avenue, Halifax, NS, Canada B3K 6R8.
authors.forename: Anthony R
authors.initials: AR
authors.lastname: Otley
authors.affiliation: University of Calgary Inflammatory Bowel Disease Clinic, Foothills Medical Centre, 1403-29 Street NW, Calgary, AB, Canada T2N 2T9.
authors.forename: Joan
authors.initials: J
authors.lastname: Heatherington
authors.affiliation: Division of Gastroenterology, St Joseph's Healthcare Hamilton, 50 Charlton Avenue East, Hamilton, ON, Canada L8N 4A6.
authors.forename: Jennifer
authors.initials: J
authors.lastname: Stretton
authors.affiliation: Division of Gastroenterology, Women's College Hospital, 76 Grenville Street, Toronto, ON, Canada M5S 1B2.
authors.forename: Natasha
authors.initials: N
authors.lastname: Bollegala
authors.affiliation: Institute for Clinical Evaluative Sciences, G1 06, 2075 Bayview Avenue, Toronto, ON, Canada M4N 3M5; CHEO Inflammatory Bowel Disease Centre, Division of Gastroenterology, Hepatology and Nutrition, Children's Hospital of Eastern Ontario, Department of Pediatrics, School of Epidemiology, Public Health and Preventive Medicine, 401 Smyth Road, Ottawa, ON, Canada K1H 8L1.
authors.forename: Eric I
authors.initials: EI
authors.lastname: Benchimol
mesh_terms: D000328:Adult; D002170:Canada; D002648:Child; D002908:Chronic Disease; D003226:Congresses as Topic; D017281:Cost of Illness; D006282:Health Personnel / Q000523:psychology*; D006301:Health Services Needs and Demand; D006801:Humans; D015212:Inflammatory Bowel Diseases / Q000523:psychology*; D011788:Quality of Life; D012955:Societies, Medical