Dr. Amanda Ricciuto | The Hospital for Sick Children Research: Ascertaining population-based long-term outcomes in inflammatory bowel disease patients with primary sclerosing cholangitis Date: 2021-2024 Amount: $375,000
Up to 8% of people with inflammatory bowel disease (IBD) have a liver disease called primary sclerosing cholangitis (PSC). PSC causes inflammation and scarring of the bile ducts. Patients with IBD and PSC (PSC-IBD) are at high risk of end-stage liver disease, colon cancer, and bile duct cancer. PSC is a leading cause of death in IBD populations. Research about IBD complicated by PSC has been limited so far. Dr. Ricciuto’s study aims to examine the long-term health outcomes (cancer, intestinal surgery, liver transplant, and death) and health services utilization (hospitalization, emergency department visits, colonoscopy, and imaging) in patients with PSC-IBD complications in order to inform resource allocation and risk stratification initiatives that include patient counselling. To learn more about Dr. Ricciuto's research, watch the video below.
Dr. Sara Ahola Kohut | Hospital for Sick Children Research: Investigating a new online support and training program for parents of children with IBD Date: 2019-2020 Amount: $50,000
To support quality of life for children living with IBD, we must support essential members of their health-care teams: their parents. In this project, researchers will determine how well iACT-P – a new online Acceptance and Commitment Training (ACT) workshop series – can realistically help parents toward this end. iACT-P features three 90-minute sessions that explore ACT, which is an emerging evidence-based approach to parenting children living with chronic illness. Here, parents will learn how to achieve self-care while managing their child’s IBD symptoms, medication, and diet in an online environment that is ideal for psychosocial programs. In these workshops, parents can meet others and share lived experiences, making it easier for them to talk about coping with a child’s unpredictable, difficult symptoms. In pediatric health, parents are an often overlooked but vital component of their child’s care and advocacy teams. Most support systems in place are designed to focus on the young patients. This innovative study will determine the impact of these workshops on parents, if they are realistic and helpful, and if they make tangible differences in parents’ level of stress, values-based behaviour, and acceptance of their child’s struggles.