Inflammatory bowel disease (IBD) is a lifelong chronic illness that causes damage within the intestinal system. Patients living with IBD experience periods of exacerbation – when the disease is active and patients can experience abdominal pain, bloating, frequent bowel movements, weight loss, malnutrition, and fatigue – and periods of remission, when the disease is inactive. Patients with active IBD are more likely to require gastrointestinal clinic visits, diagnostic procedures, hospitalizations, and surgeries. Due to the chronic, long-term, unpredictable nature of IBD, there are high costs to the health care system, and quality of life for patients, caregivers and families can be affected. Patients can also incur out-of-pocket expenses, such as travel for medical care, caregiver support and work absences.
Canada has one of the highest rates of IBD in the world and affected individuals who live in rural areas are at greater risk for poorer health and significant complications than urban patients due to limited access to health care services and specialists. Dr. Noelle Rohatinsky, Associate Professor in the College of Nursing at the University of Saskatchewan, has brought together a diverse research team of nurses, doctors, a health authority manager, a representative from Crohn’s and Colitis Canada, and patients and caregivers who live in rural areas to complete an urban-rural comparison and look at health care use and access to care for patients living with IBD in rural areas of Saskatchewan.
The team, funded through a patient-oriented research grant from Saskatchewan Health Research Foundation (SHRF) and the Saskatchewan Centre for Patient-Oriented Research (SCPOR), will be using information from a provincial database of health care use to identify differences in access to IBD-related care by patients in rural versus urban areas. They will also be carrying out interviews to explore care experiences from both rural patient and provider perspectives to identify how health care services can be enhanced.
“Patients living in rural areas are the experts in recognizing what services are needed in their areas to enhance their care,” says Rohatinsky. “Gaining insight into what services are used and needed from patient and provider perspectives is critical to inform health service delivery in rural Saskatchewan.”
“As someone who was born and raised, and now once again lives in rural Saskatchewan, I am hopeful this research project provides suggestions and solutions to the many IBD sufferers outside the province’s major centres,” says Ian Boyd, patient-family advisor from the research team.
Kendall Wicks and her husband Mike are also patient-family advisors on the team. “We have found that by living in a rural setting, we have faced so many barriers to quality care that is consistent and well monitored, and we feel we have a lot to share in terms of the rural experience for anyone living with a chronic disease,” says Kendall.
With the ultimate goal of enhancing outcomes and quality of life for patients living with IBD in rural areas of the province, this project has the potential to build access and support for patients with IBD in rural Saskatchewan by identifying services and resources most commonly used by patients with IBD living in rural areas while also highlighting the perceived priority services and resources that are missing based on input from patients and health care providers.
For more information about Crohn’s disease and Ulcerative Colitis, please visit crohnsandcolitis.ca.