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.

Healthcare professionals’ views of the experiences of individuals living with Crohn’s Disease in Spain. A qualitative study

“…As described in the available literature [ 13 , 46 ], multidisciplinary teams would constitute the most appropriate means of attending to people with CD. The results of the present study show the healthcare professionals involved are concerned by the absence of such teams.…”

The role of dietary polyphenols in inflammatory bowel disease: A possible clue on the molecular mechanisms involved in the prevention of immune and inflammatory reactions

“…TLR signaling is now subjected to intense studies because of its involvement in the genesis of various life-threatening disorders (Akira, Uematsu, & Takeuchi, 2006;Bernuth et al, 2009;Casanova, Abel, & Quintana-Murci, 2011;Maglione et al, 2014). IBD patients exhibit considerable variation in the expression of TLRs in comparison to healthy volunteers.…”

“…Ideally, healing of the bowel mucosal wound and advancement disease activity is more relevant in the current treatment than improving the signs and symptoms of the disease (Ordás et al., 2012). While addressing the challenges faced by the IBD patients, more focus should be on providing personalized therapy to a productive, appropriate, and affordable treatment or proper management of diet (Bray et al, 2016).…”

Self-care: the way to find balance in life : Development and evaluation of a self-care questionnaire for patients with inflammatory bowel disease

“…The effects of medical treatment and the risk of relapse during pregnancy influence health (62,75,76). Many patients feel uncomfortable sharing their concerns, and live alone with their concerns and anxiety (5).…”

“…In industrialized countries worldwide, the incidence of IBD is increasing (4). Living with IBD requires the understanding of people in one's surroundings (5).…”