Perspectives of health care use and access to care for individuals living with inflammatory bowel disease in rural Canada.

Abstract

Inflammatory bowel disease (IBD) is a chronic inflammatory condition of the gastrointestinal tract with no known cure. Management of IBD is complex and requires those with IBD to have lifelong interactions with the healthcare system. Individuals with IBD who live in rural areas are at risk of poorer health outcomes due to their limited access to care. This study examined healthcare utilization and access to care for rural adults with IBD. The research questions explored in this study were: What are the care experiences of healthcare providers (HCPs) and persons living with IBD in rural areas? What are the enablers and barriers to optimal IBD care in rural environments? What strategies are necessary to enhance care delivery for these individuals with IBD? This patient-oriented research initiative involved patient and family advisors as active and equal team members in decision-making throughout the project. This article reports on the qualitative findings of a larger mixed-methods study. The setting was one western Canadian province. Fourteen individuals with IBD living in rural areas and three HCPs working in rural areas participated. Interview data were analyzed using thematic analysis. Three themes were identified: communication, stressors and support systems, and coordination of care. Communication with and between HCPs was challenging due to the distance to access care. Participants described challenges related to rural HCPs' lack of IBD-related knowledge. Virtual communication, such as telehealth and phone clinics, was infrequently used yet highly recommended by participants. Individuals with IBD described various stressors and feelings of isolation while living in rural environments, and both participant groups described the need for additional formal and informal support systems to ease these stressors. Coordination of care was considered essential to optimal health outcomes, but individuals frequently experienced gaps in care. Lack of local services such as outpatient clinics, hospitals, laboratory testing, infusion clinics, and pharmacies meant individuals with IBD frequently had to travel to access care. Some participants reported bypassing existing local services, instead preferring the expedited, specialist care within larger centers. Most participants described challenges associated with living in rural areas and suggested health system improvements. Access to multidisciplinary care teams, including IBD physicians and nurses, psychologists, and dieticians, for individuals in rural areas is encouraged, as is the use of virtual care delivery options such as telehealth, online clinics, telephone clinics or advice lines, web-based video-conferencing, and email communication to increase access to care. Continued efforts to recruit and retain rural HCPs with knowledge of IBD are deemed necessary to provide continuity of care within rural environments. Strengthening formal and informal support systems and enhancing psychosocial supports in rural communities are warranted to ensure optimal wellbeing. Online strategies to provide individual and group education related to IBD are strongly recommended. Facilitating access to care in rural areas can increase disease remission, decrease direct and indirect care costs, and promote quality of life in individuals with IBD.