Patient Engagement

Engaging patients and caregivers in research for Pediatric Inflammatory Bowel Disease (IBD)

Site Principal Investigator:
Anthony Otley, MD, MSc, FRCPC 
Division of Gastroenterology, Department of Pediatrics
IWK Health Centre, Halifax, NS, Canada

Inclusion criteria:

• Diagnosed with IBD as a pediatric patient
• Canadian resident

Purpose: To identify unanswered questions related to the treatment and management of pediatric inflammatory bowel disease.

Using an established research process developed by the James Lind Alliance (JLA) in the United Kingdom, have sought to identify unanswered questions related to the treatment and management of pediatric inflammatory bowel disease (IBD). This has been  conducted through the support of the Canadian Children IBD Network: A Joint partnership of CIHR and the CH.I.L.D. Foundation, consisting of 12 pediatric IBD clinics in children’s hospitals across Canada.

A steering committee was formed, which brought together patients, families, researchers, physicians, allied health professionals, and representatives from relevant national organizations to identify unanswered research questions about pediatric IBD, and prioritize these uncertainties based on questions ranked as most important. In the results of this study, we have identified the top 10 research priorities.

Establishing research priorities will set the stage for the larger goal of creating a sustainable patient engagement agenda across our Canadian Children IBD Network.

The Identified Top 10 are:

1. What are the causes of IBD (Crohn’s disease, ulcerative colitis)?
2. Can IBD be prevented?
3. What role does diet have in the management of IBD?
4. What triggers falre ups in IBD?
5. How can we better define the role of, and improve access to, newer non-invasive, less costly, biomarkers of IBD endoscopic activity?
6. How can we increase the knowledge and/or awareness around pediatric IBD so that diagnosis is not delayed?
7. What are the long term effects of medications used to treat IBD?
8. How does an early diagnosis of IBD in childhood/teenagers impact the lifeling course (prognosis) of the disease?
9. What is the impact of access to psychological/mental health support in the management of pediatric IBD?
10. What is the optimal approach to diagnosis (education, psychological support, diagnostic tests) in pediatric patients with IBD?

For complete information, including videos and graphics presentations, visit: Patient Engagement (cidscann.ca)