Canadians living with Crohn’s disease and ulcerative colitis, known together as inflammatory bowel disease (IBD), have come together with clinicians at a first of its kind patient summit to obtain a deeper understanding of the unmet needs of IBD patients and their caregivers. The meeting, facilitated by Crohn’s and Colitis Canada, brought patients, caregivers, clinicians and IBD nurses to the table for the first time and is a critical step forward. What resulted, is a number of recommendations that will inform efforts to increase public awareness, develop advocacy strategies and research priorities and ultimately, improve quality of life for Canadians living with Crohn’s and colitis.
Andrea Hopkins is one of a quarter of a million Canadians with inflammatory bowel disease and participated in the summit. Andrea and others were very candid with their personal experiences to get to the root of the realities and challenges they face. “Two years after being diagnosed with ulcerative colitis my manageable disease became unmanageable very quickly and I was hospitalized for over three months,” said Andrea. “I had surgery that removed my colon and left me with an ostomy bag. I didn’t really understand what I was dealing with at the time and I felt alone. Today, I spend a lot of my personal time connecting people with IBD together because the more education and awareness there is, the better off we are.”
The summit, with a follow-up report published in the Canadian Journal of Gastroenterology and Hepatology,was a first-ever: while Canada has one of the highest rates of IBD in the world and is also a centre of excellence worldwide in research and care, this was the first time that patients and clinicians had come together to discuss how to elevate patient care even further. The patient community made key recommendations to improve the understanding, care, treatment access and other services needed by adults and children living with Crohn’s and colitis.
“The report recommendations are clear and identify priority issues. By facilitating this type of discussion, Crohn’s and Colitis Canada is helping to elevate issues and challenges that are most important to patients,” said Aida Fernandes, Vice President of Research and Patient Programs of Crohn’s and Colitis Canada and one of the co-authors of the published report. “We will continue to work hand-in-hand with patients and clinicians to address the identified challenges in order to make meaningful improvements in the lives of patients.”
The recommendations include:
- Increase awareness of Crohn’s disease and ulcerative colitis, their complications and the barriers patients face in daily life;
- Identify and address challenges patients face when dealing with the health system;
- Encourage healthcare provider openness to discuss personalized treatment plans, including diet and alternative therapies with patients;
- Support the investigation of causes, better therapies and an improved health system; and
- Build capacity to ensure there is a strong new generation of researchers and healthcare providers
In line with the report recommendations Crohn’s and Colitis Canada recently announced a new national network of patient care and research centres called PACE – Promoting Access and Care through Centres of Excellence – as one step forward in implementing these recommendations. “With PACE, Crohn’s and Colitis Canada is taking a major step forward to close the gaps in Crohn’s disease and ulcerative colitis care, promoting better treatment approaches, empowering patients and improving long-term outcomes through collaboration among our world-class health centres,” said Mina Mawani, President and Chief Executive Officer, Crohn’s and Colitis Canada. – CNW