Storytelling of Indigenous patient and family advocates engaged in patient-oriented research initiatives in the field of inflammatory bowel disease.

Background and aim: The history of colonization and its ongoing impact poses significant health disparities among Indigenous communities. We aimed to centre the voices and stories of Indigenous patients and family advocates (IPFAs-Indigenous patients living with inflammatory bowel disease [IBD] and family members of Indigenous individuals with IBD) engaged in patient-oriented research projects and who are part of the IBD among Indigenous Peoples Research Team (IBD-IPRT). Methods: IPFAs and Indigenous and non-Indigenous researchers of the IBD-IPRT followed a storytelling research methodology to let IPFAs share their stories as research team members. Four IPFAs documented their experiences as IBD patients, advocates, and research partners. The stories were analyzed for themes. The identified themes were collaboratively verified with the IPFAs. Results: The full stories shared by the IPFAs were transcribed and presented in this paper. Following a background analysis of themes in the 4 narratives, we were also able to identify 4 key themes that could be relevant to improving patient-oriented research initiatives: (1) health promotion, (2) leadership and voice, (3) community engagement, and (4) disease awareness and access to care. Trust building, strong relationships, and effective partnerships are core components for conducting patient-oriented research with Indigenous community members. Conclusions: Indigenous patient engagement in health research is crucial to ensure that lived experiences, knowledge, and cultural values are adequately adopted to improve research outcomes. Centering IPFAs in IBD research can promote cultural awareness and actionable recommendations to improve health outcomes for individuals with IBD and their families and caregivers.

Inequities in Rural and Urban Health Care Utilization Among Individuals Diagnosed With Inflammatory Bowel Disease: A Retrospective Population-Based Cohort Study From Saskatchewan, Canada.

Background: Rural dwellers with inflammatory bowel disease (IBD) face barriers to accessing specialized health services. We aimed to contrast health care utilization between rural and urban residents diagnosed with IBD in Saskatchewan, Canada. Methods: We completed a population-based retrospective study from 1998/1999 to 2017/2018 using administrative health databases. A validated algorithm was used to identify incident IBD cases aged 18+. Rural/urban residence was assigned at IBD diagnosis. Outpatient (gastroenterology visits, lower endoscopies, and IBD medications claims) and inpatient (IBD-specific and IBD-related hospitalizations, and surgeries for IBD) outcomes were measured after IBD diagnosis. Cox proportional hazard, negative binomial, and logistic models were used to evaluate associations adjusting by sex, age, neighbourhood income quintile, and disease type. Hazard ratios (HR), incidence rate ratios (IRR), odds ratios (OR), and 95% confidence intervals (95% CI) were reported. Results: From 5,173 incident IBD cases, 1,544 (29.8%) were living in rural Saskatchewan at IBD diagnosis. Compared to urban dwellers, rural residents had fewer gastroenterology visits (HR = 0.82, 95% CI: 0.77-0.88), were less likely to have a gastroenterologist as primary IBD care provider (OR = 0.60, 95% CI: 0.51-0.70), and had lower endoscopies rates (IRR = 0.92, 95% CI: 0.87-0.98) and more 5-aminosalicylic acid claims (HR = 1.10, 95% CI: 1.02-1.18). Rural residents had a higher risk and rates of IBD-specific (HR = 1.23, 95% CI: 1.13-1.34; IRR = 1.22, 95% CI: 1.09-1.37) and IBD-related (HR = 1.20, 95% CI: 1.11-1.31; IRR = 1.23, 95% CI: 1.10-1.37) hospitalizations than their urban counterparts. Conclusion: We identified rural-urban disparities in IBD health care utilization that reflect rural-urban inequities in the access to IBD care. These inequities require attention to promote health care innovation and equitable management of patients with IBD living in rural areas.

Increasing Prevalence and Stable Incidence Rates of Inflammatory Bowel Disease Among First Nations: Population-Based Evidence From a Western Canadian Province.

BACKGROUND: There is limited to no evidence of the prevalence and incidence rates of inflammatory bowel disease (IBD) among Indigenous peoples. In partnership with Indigenous patients and family advocates, we aimed to estimate the prevalence, incidence, and trends over time of IBD among First Nations (FNs) since 1999 in the Western Canadian province of Saskatchewan. METHODS: We conducted a retrospective population-based study linking provincial administrative health data from the 1999-2000 to 2016-2017 fiscal years. An IBD case definition requiring multiple health care contacts was used. The prevalence and incidence data were modeled using generalized linear models and a negative binomial distribution. Models considered the effect of age groups, sex, diagnosis type (ulcerative colitis [UC], Crohn disease [CD]), and fiscal years to estimate prevalence and incidence rates and trends over time. RESULTS: The prevalence of IBD among FNs increased from 64/100,000 (95% confidence interval [CI], 62-66) in 1999-2000 to 142/100,000 (95% CI, 140-144) people in 2016-2017, with an annual average increase of 4.2% (95% CI, 3.2%-5.2%). Similarly, the prevalence of UC and CD, respectively, increased by 3.4% (95% CI, 2.3%-4.6%) and 4.1% (95% CI, 3.3%-4.9%) per year. In contrast, the incidence rates of IBD, UC, and CD among FNs depicted stable trends over time; no statistically significant changes were observed in the annual change trend tests. The ratio of UC to CD was 1.71. CONCLUSIONS: We provided population-based evidence of the increasing prevalence and stable incidence rates of IBD among FNs. Further studies are needed in other regions to continue understanding the patterns of IBD among Indigenous peoples.

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

INTRODUCTION: 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? METHODS: 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. RESULTS: 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. CONCLUSION: 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.