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.

The 2023 Impact of Inflammatory Bowel Disease in Canada: Epidemiology of IBD.

Inflammatory bowel disease (IBD), consisting of Crohn's disease and ulcerative colitis, is recognized across the world, though Canada has among the highest burdens of IBD in the world. The Canadian Gastro-Intestinal Epidemiology Consortium (CanGIEC) led a six-province study that demonstrated the compounding prevalence of IBD in Canada from 400 per 100,000 in 2002 to 636 per 100,000 in 2014. The prevalence in 2023 is estimated at 825 per 100,000, meaning that over 320,000 people in Canada are living with IBD. Prevalence is forecasted to rise by 2.44% per year such that 1.1% of the population, 470,000 Canadians, will live with IBD by 2035. The overall incidence of IBD in 2023 is 30 per 100,000 person-years, indicating that over 11,000 Canadians will be newly diagnosed with IBD in 2023. Incidence is forecasted to rise by 0.58% per year up to 32.1 per 100,000 by 2035. The rising incidence of IBD is propelled by pediatric-onset IBD, which is rising by 1.23% per year from 15.6 per 100,000 in 2023 to 18.0 per 100,000 in 2035. In contrast, incidence rates among adults and seniors are relatively stable. Understanding the determinates of IBD has expanded through prospective cohort studies such as the Crohn's and Colitis Canada Genetic, Environmental, Microbial (CCC-GEM) project. Consensus recommendations towards diet, lifestyle, behavioural and environmental modifications have been proposed by international organizations with the goal of optimizing disease control and ultimately preventing the development of IBD. Despite these efforts, Canadian healthcare systems will need to prepare for the rising number of people living with IBD.

The 2023 Impact of Inflammatory Bowel Disease in Canada: Mental Health and Inflammatory Bowel Disease.

Psychiatric disorders are 1.5 to 2 times more prevalent in persons with inflammatory bowel disease (IBD) than in the general population, with pooled prevalence estimates of 21% for clinical anxiety and 15% for depression. Rates are even higher when considering mental health symptoms, as nearly one-third of persons with IBD experience elevated anxiety symptoms and one-quarter experience depression symptoms. Rates of these symptoms were much higher during periods of disease activity, more common in women than men, and more common in Crohn's disease than ulcerative colitis. There is robust evidence of the detrimental effects of comorbid depression and anxiety on the subsequent course of IBD based on longitudinal studies tracking outcomes over time. However, psychiatric disorders and IBD have bidirectional effects, with each affecting risk of the other. Elevated mental health concerns have been consistently associated with greater healthcare utilization and costs related to IBD. There is some signal that low resilience in adolescence could be a risk factor for developing IBD and that enhancing resilience may improve mental health and intestinal disease outcomes in IBD. Psychological therapies used to treat anxiety and depression occurring in the context of IBD have been shown to significantly improve the quality of life for persons with IBD and reduce anxiety and depression. There is less evidence in regard to the impact of psychotropic medications on mental health or disease outcomes in persons with IBD. There is consensus, however, that mental health must be addressed as part of comprehensive IBD care for children and adults.

Health care utilization differences between First Nations people and the general population with inflammatory bowel disease: a retrospective cohort study from Saskatchewan, Canada.

BACKGROUND: Indigenous people in Canada often face barriers to access specialized care, with limited data in evaluating health care utilization among Indigenous people with inflammatory bowel disease (IBD). We aimed to compare health care utilization between First Nations patients and those in the general population diagnosed with IBD in Saskatchewan. METHODS: We conducted a patient-oriented, population-based, retrospective cohort study by linking administrative health databases of Saskatchewan between fiscal years 1998/99 and 2017/18. We designed and completed this study in partnership with Indigenous patients and family advocates. We applied a validated algorithm to identify IBD incident cases and then used the self-declared First Nations status variable to divide those cases. We applied a 1:5 ratio for age and sex matching and used Cox proportional models to assess associations. Hazard ratios (HRs) and 95% confidence intervals (CIs) were reported. RESULTS: We created a matched cohort with 696 IBD incident cases: 116 First Nations patients and 580 patients in the general population. We observed differences between the groups for IBD-specific hospital admissions (HR 1.33, 95% CI 1.01-1.75), IBD-related hospital admissions (HR 1.55, 95% CI 1.20-2.01), medication claims for IBD (HR 0.52, 95% CI 0.41-0.65) and 5-aminosalicylic acid claims (HR 0.56, 95% CI 0.45-0.71) adjusting by rural or urban residence and diagnosis type. There were no significant differences in the hazard rate of outpatient gastroenterology visits (HR 1.13, 95% CI 0.90-1.41), colonoscopies (HR 1.14, 95% CI 0.92-1.41) and surgeries for IBD (HR 1.14, 95% CI 0.80-1.64). INTERPRETATION: We identified that First Nations patients diagnosed with IBD had a higher rate of hospital admissions owing to IBD than patients in the general population diagnosed with IBD. We also found an inverse association between First Nations status and having prescription medication claims for IBD.

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.