Indigenous Patient Research Articles

Indigenous perspectives on breaking bad news: ethical considerations for healthcare providers

Most healthcare providers (HCPs) work from ethical principles based on a Western model of practice that may not adhere to the cultural values intrinsic to Indigenous peoples. Breaking bad news...

Pancreatite posterior a infecção por SARS-CoV-2 em paciente pediátrico indígena da tribo Paranapuã

OBJECTIVE: To hypothesize a correlation between previous infection by SARS-Cov-2 and acute pancreatitis due to the inflammatory process caused by the virus in an indigenous pediatric patient. CASE REPORT: A 7-year-old female indigenous patient, from the Paranapua tribe, with a history of contact with community with COVID-19 infected, presenting with acute pancreatitis of unknown etiology even after laboratory and imaging investigation, presenting with pulmonary involvement and IgG positive for SARS-CoV-2. COMMENTS: At the threshold of the COVID-19 pandemic, there was an increase in the involvement of various organs and systems, especially in pediatric patients, intriguing the appearance of inflammatory conditions such as acute pancreatitis. This case report describes a rare extrapulmonary form of COVID-19, not yet described in the literature, and a possible correlation between viral inflammation and pancreatic involvement in an indigenous patient from Paranapua.

A Comprehensive Quality Assurance Platform in Canada for National Point-of-Care Chronic Kidney Disease Screening: The Kidney Check Program

A Comprehensive Quality Assurance Platform in Canada for National Point-of-Care Chronic Kidney Disease Screening: The Kidney Check Program

Characteristics of Aboriginal and Torres Strait Islander peoples attending Australian emergency departments.

Aboriginal and Torres Strait Islander patients are overrepresented in Australian EDs. The present study aimed to assess their characteristics in utilising ED services at a national level. This exploratory, quantitative study used 2016-2017 de-identified data from the National Non-admitted Patient Emergency Department Care Database to assess the proportions (with 95% confidence interval) of Indigenous and non-Indigenous Australians across various aspects of ED presentations, including mode of arrival, triage scale, diagnosis information, episode end status and ED length of stay. Episode level ED data were compared by Indigenous status and geographical remoteness of EDs. Of 7.4 million presentations, 6.58% were Indigenous presentations, with over two-thirds occurring in regional and remote EDs. Indigenous patients were more likely than non-Indigenous patients to arrive to EDs by ambulance and police/correctional services vehicle across all remoteness areas. Additionally, they were more likely to present with respiratory system illness, illness of the skin/subcutaneous tissue/breast and mental/behavioural disorders. Indigenous Australians were more likely to leave EDs before being seen or care complete (odds ratio 1.73, 95% confidence interval 1.71-1.74), and this was observed for patients classified across all levels of triage scale. This is the first national study looking at the characteristics of and reasons for presenting to Australian EDs for Indigenous and non-Indigenous patients. Our findings provide important insight into the potential factors affecting Indigenous patient care, and an impetus for ongoing research and advocacy work to improve the quality of emergency care provided to Indigenous Australians.

Providing culturally safe care to Indigenous people living with diabetes: Identifying barriers and enablers from different perspectives.

In recent years, cultural safety has been proposed as a transformative approach to health care allowing improved consideration of Indigenous patient needs, expectations, rights and identities. This community‐based participatory study aimed to identify potential barriers and enablers to cultural safety in health care provided to Atikamekw living with diabetes in Québec, Canada. Based on a qualitative descriptive design, the study uses talking circles as a data collection strategy. Three talking circles were conducted with Atikamekw living with diabetes and caregivers, as well as with health professionals of the family medicine teaching clinic providing services to the community. Two team members performed deductive thematic analysis based on key dimensions of cultural safety. Results highlight four categories of barriers and enablers to cultural safety for Atikamekw living with diabetes, related to social determinants of health (including colonialism), health services organization, language and communication, as well as Atikamekw traditional practices and cultural perspectives of health. This study is one of the few that provides concrete suggestions to address key aspects of diabetes care in a culturally respectful way. Our findings indicate that potential enablers of cultural safety reside at different (from individual to structural) levels of change. Solutions in this matter will require strong political will and policy support to ensure intervention sustainability.Patient or public contributionPartners and patients have been involved in identifying the need for this study, framing the research question, developing the data collection tools, recruiting participants and interpreting results.

Abstract PR11: Multi-omic disparities in head and neck squamous cell carcinomas in patients of different racio-ethnic backgrounds

Abstract Background: Numerous studies have demonstrated poorer outcomes by race/ethnicity in head and neck squamous cell carcinoma (HNSCC). Although some studies have identified differences in socioeconomic status and access to care as important factors affecting outcomes, differences in the genomic and extracellular composition of tumors from patients of different races/ethnicities have yet to be explored. Methods: We downloaded the clinical information, single nucleotide variation (SNV), copy number aberration (CNA), mRNA sequencing, and reverse phase protein assay (RPPA) data from The Cancer Genome Atlas (TCGA) and The Cancer Proteome Altas HNSCC cohorts. Survival data and hypoxia scores were downloaded from published studies. We stratified the cohort into combined racio-ethnic groups (REG) as follows: White/Non-Hispanic (White), Hispanic/Latino (Hispanic), Black/African American (Black), Asian, American Indian/Non-Hispanic (Indigenous American). Cases positive for human papillomavirus (HPV) occurred almost exclusively among White patients (68/71) and thus they were excluded. Results: The HPV-negative cohort contained 354 White, 43 Black, 22 Hispanic and 11 Asian and 1 Indigenous American patient. Black patients had poorer overall and progression-free survival than White patients on univariate and multivariate analysis, respectively (p<0.05). There were no significant SNV differences between any REGs after false discovery rate (FDR) correction. However, there was a large number of CNAs with higher frequency in Black patients compared to White patients (2294 shallow deletions, 96 gains, FDR<0.1). In particular, loss of the 3p chromosome arm was markedly more frequent in tumors from Black patients (p<0.01), but was not associated with poorer prognosis. From the RPPA data we found 31 cancer-associated proteins and phosphoproteins differentially expressed between Black and White patients (FDR<0.1). These included proteins in the PI3K/Akt/mTOR pathway in White patients, and N-cadherin and Hsp70 in Black patients. Deconvolution of the mRNA sequencing counts revealed differences in lymphocyte infiltration of the tumor microenvironment between Black, Hispanic, and White patients (FDR<0.1). Black patients also had more hypoxic tumors than White patients (FDR<0.1). Conclusions: In summary, we have identified important biological differences between tumors of different REGs that may partially account for differences in survival and inform targeted treatment decisions towards equitable outcomes. Citation Format: Hugh A.J. Kim, Peter Y.F. Zeng, Alana Sorgini, Mushfiq H. Shaikh, Neil Mundi, Halema Khan, Danielle MacNeil, Mohammed I. Khan, Krupal Patel, Adrian Mendez, John Yoo, Kevin Fung, Pencilla Lang, David A. Palma, Joe S. Mymryk, John W. Barrett, Paul C. Boutros, Anthony C. Nichols. Multi-omic disparities in head and neck squamous cell carcinomas in patients of different racio-ethnic backgrounds [abstract]. In: Proceedings of the AACR Virtual Conference: Thirteenth AACR Conference on the Science of Cancer Health Disparities in Racial/Ethnic Minorities and the Medically Underserved; 2020 Oct 2-4. Philadelphia (PA): AACR; Cancer Epidemiol Biomarkers Prev 2020;29(12 Suppl):Abstract nr PR11.

Fakes and chemicals: indigenous medicine in contemporary Kenya and implications for health equity

BackgroundAccess to effective biomedical treatments for humans and livestock in Kenya is far from universal. Indigenous healing has a significant role to play in contemporary society in Kenya, yet access is not the only reason for this. Beliefs surrounding the composition of biomedicines, people’s experiences of biomedical care, and issues of counterfeit biomedicines sold over the counter have led to patients seeking care outside of biomedical institutions.MethodsThis study explores local realities of treatment seeking in one rural and one urban study site, for both humans and their livestock, including when, where and how people access certain types of medicines. Using an ethnographic approach to interviews, focus groups and observations, I explore the role that indigenous healing, both herbal and occasionally spiritual, plays within this context with healers and community members.ResultsIndigenous healing remains important for many people due to their mistrust and suspicion of biomedicine and big pharma. Their interactions with the healer or doctor, and the equity of these interactions, influence their decisions whether to access herbal or biomedical care, or a combination of the two. Indigenous healing bridges the gap many people experience when they are unable to access biomedical treatments and effectively creates a broader, more equitable coverage for healthcare. The plurality of reasons surrounding decision making is complex, but it is clear that many people often use indigenous healing, improvements in the regulation of both formulas and practice would assist people to access more effective treatment.ConclusionsIndigenous healing is an important way in which Kenyans in rural and urban areas access healthcare for themselves and their animals. Issues of counterfeit biomedicines have led to broad mistrust and people favour indigenous healing, depending on the illness or severity of symptoms. Indigenous healing is a vital way in which people in underserved rural and urban populations access care. Herbal medicines and indigenous healing are trusted due to the greater transparency in their creation, and the more equitable relationship between indigenous doctor and patient. The study demonstrates that a pluralistic system is appropriate to increasing equity in access to healthcare in both urban and rural settings, as well as the importance of biomedical care providers respecting indigenous healing and viewing it with legitimacy. By taking a One Health perspective to understand the intersection of humans, livestock and the environment, we can better understand critical aspects affecting decision making for treatment and implications for healthcare equity in a rapidly changing world.

Is there any health and geographical disparity in indigenous and non-indigenous women of Western Australia (WA)? A retrospective review with respect to de novo metastasis.

115 Background: Indigenous women with breast cancer have substantially higher mortality then non-Indigenous women. They are more likely to live in more remote communities with potential delays to presentation, investigation and diagnosis as well as slower access to cancer treatment facilities, potentially impacting survival. Here we explore by evaluating the diagnosis of de-novo metastasis and any association of remoteness, highlighting the geographic and possibly early access to treatment. Methods: A cohort of patients was retrospectively selected comprising age- and remoteness matched Indigenous and non-Indigenous women in a 1:1 ratio from the Western Australian Cancer Registry. Further data were collected from medical records and results systems. Remoteness was defined by the ARIA system. In addition, the distance from the nearest treatment center was calculated. The survival analysis was performed by Indigenous status and remoteness. Results: The final cohort comprised 250 Indigenous and 261 non–Indigenous women. Of the total, 7.6% (19/250) and 7.7% (20/261) were identified to have de-novo metastasis. At 10 years of follow up, most de-novo metastatic patients in both groups were from remote communities, distributed as 10.1, 9.1, 7.8, 8.7 and 5.0 % in metropolitan, inner regional, outer regional, remote and very remote areas respectively. In Indigenous group with de-novo metastasis the average distance of patient from treatment center was 1720km for vs 1018 km in Non-Indigenous patient with a p-value of 0.03. In non-metastasis cohort, Indigenous patient has 1065 km v 1241 km in non-indigenous group. Considering outcomes for those developing metastatic disease, median survivals after metastatic diagnosis were shorter for Indigenous patients, 21 v 33 months, p = 0.03. Conclusions: Indigenous women in WA with metastatic breast cancer have inferior survival outcomes from diagnosis of metastases relative to non-Indigenous peers. Most de-novo metastatic patients were from remote locations in both cohorts but no relation between remoteness and de-novo metastasis, identified to be impacting survival. Future studies are needed to better elucidate if any geographical, health care disparities and improve on treatment related outcomes. It is suggested to derive targeted policies to improve survival outcome of all Indigenous cancer patients, particularly those residing in remote areas.

The experiences of Indigenous people with cancer in Saskatchewan: a patient-oriented qualitative study using a sharing circle.

Although disparities in cancer rates, later diagnoses and lower survival rates between Indigenous and non-Indigenous people have been documented, little is known about how Indigenous patients with cancer encounter the health care system. We explored perceptions and experiences of Indigenous patients with cancer and their families to understand better how 2 key concepts - trust and world view - influence cancer care decisions. In this patient-oriented study that included participation of 2 patient partners, qualitative data were collected from Indigenous patients with cancer and their families using an Indigenous method of sharing circles. The sharing circle occurred at a culturally appropriate place, Wanuskewin Heritage Park, Saskatoon, on Sept. 22, 2017. The first patient partner started the sharing circle by sharing their cancer journey, thus engaging the Indigenous methodology of storytelling. This patient partner was involved in selecting the data collection method and recruiting participants through snowballing and social media. Trust and world view were employed as meta themes to guide our examination of the data. In keeping with Indigenous methodology, interview transcripts were analyzed using narrative analysis. The themes were reviewed and verified by a second Indigenous patient partner. There were 14 participants in the sharing circle. The 2 meta themes, trust and world view, comprised 8 subthemes. The meta theme trust included mistrust with diagnosis and Western treatment after cancer therapy, protection of Indigenous medicine and physician expertise with treatment recommendations. The world view meta theme included the following subthemes: best of both worlds, spiritual beliefs, required to be strong for family and importance of knowing Indigenous survivors. This study displayed complex relations between trust and world view in the cancer journeys of Indigenous patients and their families. These findings may assist health care providers in gaining a better understanding of how trust and world view affect the decision-making of Indigenous patients regarding cancer care.

"We're very much part of the team here": A culture of respect for Indigenous health workforce transforms Indigenous health care.

Improving health outcomes for Indigenous people by strengthening the cultural safety of care is a vital challenge for the health sector, both in Australia and internationally. Although Indigenous people have long requested to have Indigenous practitioners involved in their health care, many health services report difficulties with recruiting and retaining Indigenous staff. This article describes Indigenous workforce policies and strategies from two Australian health services, as well as cancer-service specific strategies. Services were identified as part of a national study designed to identify and assess innovative services for Indigenous cancer patients and their families. In-depth interviews were conducted in a small number of identified services. The interviews from two services, which stood out as particularly high performing, were analysed through the lens of Indigenous health workforce. Twenty-four hospital staff (Indigenous and non-Indigenous), five Indigenous people with cancer and three family members shared their views and experiences. Eight themes were identified from the way that the two services supported their Indigenous workforce: strong executive leadership, a proactive employment strategy, the Indigenous Health Unit, the Indigenous Liaison Officer, multidisciplinary team inclusion, professional development, work environment and a culture of respect. Participants reported two positive outcomes resulting from the active implementation of the eight workforce themes: 'Improved Indigenous patient outcomes' and 'Improved staff outcomes'. These two cancer services and their affiliated hospitals show how positive patient outcomes and a strong Indigenous health workforce can be achieved when a health service has strong leadership, commits to an inclusive and enabling culture, facilitates two-way learning and develops specific support structures appropriate for Indigenous staff. It is hoped that the strategies captured in this study will be used by health services and cancer services to inform their own policies and programs to support building their Indigenous workforce.

Clinical, genomics and networking analyses of a high-altitude native American Ecuadorian patient with congenital insensitivity to pain with anhidrosis: a case report

BackgroundCongenital insensitivity to pain with anhidrosis (CIPA) is an extremely rare autosomal recessive disorder characterized by insensitivity to pain, inability to sweat and intellectual disability. CIPA is caused by mutations in the neurotrophic tyrosine kinase receptor type 1 gene (NTRK1) that encodes the high-affinity receptor of nerve growth factor (NGF).Case presentationHere, we present clinical and molecular findings in a 9-year-old girl with CIPA. The high-altitude indigenous Ecuadorian patient presented several health problems such as anhidrosis, bone fractures, self-mutilation, osteochondroma, intellectual disability and Riga-Fede disease. After the mutational analysis of NTRK1, the patient showed a clearly autosomal recessive inheritance pattern with the pathogenic mutation rs763758904 (Arg602*) and the second missense mutation rs80356677 (Asp674Tyr). Additionally, the genomic analysis showed 69 pathogenic and/or likely pathogenic variants in 46 genes possibly related to phenotypic heterogeneity, including the rs324420 variant in the FAAH gene. The gene ontology enrichment analysis showed 28 mutated genes involved in several biological processes. As a novel contribution, the protein-protein interaction network analysis showed that NTRK1, SPTBN2 and GRM6 interact with several proteins of the pain matrix involved in the response to stimulus and nervous system development.ConclusionsThis is the first study that associates clinical, genomics and networking analyses in a Native American patient with consanguinity background in order to better understand CIPA pathogenesis.

Engaging indigenous patient partners in patient-oriented research: lessons from a one-year initiative

BackgroundPatient-oriented research (POR) is a specific application of participatory research that promotes active patient engagement in health research. There is a growing concern that people involved in POR do not reflect the diversity of the population such research aims to serve, but are rather those more ‘easily’ engaged with institutions, organizations and society. Indigenous peoples are among such groups generally underrepresented in POR. The “Indigenous patient partners platform project” was a small-scale initiative aimed to address the issue of the underrepresentation of Indigenous people in patient-oriented research by recruiting, orienting and supporting Indigenous patient partners in Québec (Canada). This article reports on the findings of an evaluation conducted at the end of the project to garner lessons and identify strategies for engaging Indigenous patient partners in patient-oriented research.MethodsThe evaluation of this initiative used a case study design hinging on documentary analysis and committee member interviews. Project documents (n = 29) included agendas and meeting minutes, support documents from the orientation workshop and workshop evaluations, and tools the committee developed as part of the project. Interview participants (n = 6) were patients and organizational partners. Thematic analysis was performed by two members of the research team. Patient partners actively contributed to validating the interpretation of result and knowledge translation.ResultsResults point to four key components of Indigenous patient partner engagement in POR: initiation of partnership, interest development, capacity building and involvement in research. Specific lessons emphasize the importance of community connections in recruiting, sustaining and motivating patient partners, the need to be flexible in the engagement process, and the importance of consistently valuing patient partner contributions and involvement.ConclusionsThere is a need to engage Indigenous patient partners in POR to ensure that healthcare practices, policies and research take their particular needs, stories and culture into account. While results of this evaluation are generally consistent with the existing literature on patient engagement, they offer additional insight into how to effectively engage Indigenous patient partners in research, which might also be relevant to the involvement of other marginalized populations who have been historically and systemically disempowered.

Abstract C026: Lack of HER4 signaling predicts poor prognosis among triple-negative breast cancer patients of African descent: A multi-institutional study

Abstract Triple-negative breast cancer (TNBC) disproportionately affects African-American (AA) women. Literature underscores that women from West Africa exhibit higher TNBC incidence and mortality rates than AA women. Distinctions in inherent tumor biology between the races have been speculated to underlie this global disparate burden. We conducted a multi-institutional study in which we analyzed differences in expression of BC-related immunohistochemical biomarkers between self-reported European, EA, AA, and African TNBC patients treated at Nottingham University in Nottingham, UK, Emory University in Atlanta, GA, and Olabisi Onabanjo University Teaching Hospital in Sagamu, Nigeria, respectively. We discovered highly significant differences in expression of the members of the HER family, HER1/EGFR, HER3 and HER4, between the racial groups (p<0.0001). HER4 and a summation of EGFR and HER4 (EGFR-HER4) scores decreased with increasing self-reported African ancestry. Gene expression analysis of The Cancer Genome Atlas (TCGA) publicly available dataset revealed that the genes encoding EGFR (ERBB1) and HER4 (ERBB4) were expressed less among AA compared to EA TNBC samples (p<0.05). A lack of HER4 expression correlated with high Nottingham grade (p=0.03) and mitotic index (p=0.03) among AA patients and high Ki-67 (p=0.04) among early-stage AA patients. Furthermore, low combined EGFR-HER4 expression was associated with low nuclear AR expression (p=0.03) among early-stage AA patients. Among both AA and African patients, low HER4 expression predicted significantly shorter 5-year overall survival (OS) (p=0.001) in Kaplan-Meier analyses. In multivariate models, low EGFR-HER4 score predicted shorter 10-year OS (p=0.03; HR: 0.03; 95% CI:0.001-0.76) and disease-free survival (p=0.04; HR: 0.03; 95% CI:0.001-0.80) among non-chemotherapy treated AA patients. In the TCGA dataset, we also observed downregulation of the EGFR but upregulation of the Notch signaling pathways to be more prevalent among AA compared to EA TNBC patients. Furthermore, peroxisome proliferator-activated receptor (PPAR) signaling was downregulated more among TNBC patients with low compared to high combined EGFR-HER4 scores (p=0.036). These results suggest that HER4 signaling differs among biogeographically distinct TNBC patients and that lack of HER4 and EGFR-HER4 expression may predict more aggressive disease among AA and indigenous African TNBC patient populations. Our findings also suggest that TNBC patients of African descent with low HER4 and low EGFR-HER4 scores overexpress members of the Notch and underexpress members of the PPAR signaling pathways, with potential therapeutic value. Citation Format: Nikita Wright, Chaeyun Lee, Uma Krishnamurti, Xiaoxian Li, Bikram Sahoo, Andrew Green, Ian Ellis, Ayodeji Agboola, Guanhao Wei, Lauren McCullough, Emad Rakha, Padmashree C.G. Rida, Remus Osan, Ritu Aneja. Lack of HER4 signaling predicts poor prognosis among triple-negative breast cancer patients of African descent: A multi-institutional study [abstract]. In: Proceedings of the Eleventh AACR Conference on the Science of Cancer Health Disparities in Racial/Ethnic Minorities and the Medically Underserved; 2018 Nov 2-5; New Orleans, LA. Philadelphia (PA): AACR; Cancer Epidemiol Biomarkers Prev 2020;29(6 Suppl):Abstract nr C026.

Classification of childhood medulloblastoma into WHO-defined multiple subtypes based on textural analysis.

Childhood medulloblastoma is a case of a childhood brain tumour that requires close attention due to the low survival rate. Effective prognosis depends a lot on accurate detection of its subtype. The present study proposes a texture-based computer-aided categorization of childhood medulloblastoma samples. According to the World Health Organization, it has four subtypes (desmoplastic, classic, nodular and large). Classification is done in two levels: (i) normal and abnormal and (ii) its four subtypes. The system is evaluated on indigenous patient samples collected from the region. The main objective of database generation is to create a data set of childhood medulloblastoma samples since there exists no available benchmark data set. The proposed framework for automated classification is based on the architectural property and the distribution of cells. Five texture features were extracted for the feature set, namely: grey-level co-occurrence matrix, grey-level run length matrix, first-order histogram features, local binary pattern and Tamura features. The performance of each feature set was evaluated, both individually and in combinations, using five different classifiers. Fivefold cross-validation was used for training and testing the data set. Experiments on both individual feature sets and combinations (best-2, best-3, best-4 and all-5) of feature sets were evaluated based on the accuracy of performance. It was revealed that the combined best-4 feature set resulted in the highest accuracy of 91.3%. The precision, recall and specificity were 0.913, 0.913 and 0.97, respectively. Significantly, it implied that the all-5 feature set is not necessary to have a useful classification. Feature reduction by principal component analysis resulted in increased accuracy of 96.7%. LAY DESCRIPTION: Childhood medulloblastoma is a case of childhood brain tumour that requires high attention due to a low survival rate. Effective prognosis depends a lot on accurate detection of its subtype. The present study proposes a texture-based computer-aided categorization of childhood medulloblastoma samples. According to the World Health Organization (W.H.O), it has four subtypes (desmoplastic, classic, nodular, and large). Classification is done in two levels: i) normal and abnormal ii) its four subtypes. The system is evaluated on indigenous patient samples collected from the region. The main objective of database generation is to create a data set of childhood medulloblastoma samples since there exists no available benchmark data set. The proposed framework is a model for the automatic classification of the samples. The tissue samples obtained post-operation by doctors are converted into images, and then necessary algorithms are applied so that certain features describing each group of the image are known and studied for classification. Later these images are classified using the image features into the subtypes of abnormal samples.

FUNGEMIA POR TRICHOSPORON ASAHII SECUNDARIA A INFECCIÓN DE PIEDRA BLANCA EN PACIENTE INDÍGENA

El género Trichosporon es el responsable de la infección benigna superficial conocida como piedra blanca. Especies de este género y específicamente Trichosporon asahii se han descrito como agentes de infecciones oportunistas en pacientes inmunodeprimidos. Se describe un caso de fungemia por T. asahii en una paciente adolescente indígena con leucemia linfoblástica aguda (LLA). Se realizó identificación T. asahii mediante el sistema automatizado Vitek (Biomerieux ®), de los aislamientos obtenidos tanto de los hemocultivos como de los nódulos de la cabellera. LLA constituye una condición debilitante del sistema inmune que expuso a nuestra paciente a la fácil adquisición de una infección oportunista que dio lugar a una sepsis.

Qualitative Study of Treatment Preferences for Rheumatoid Arthritis and Pharmacotherapy Acceptance: Indigenous Patient Perspectives.

ObjectiveTo explore patient preferences that influence decision‐making in the management of rheumatoid arthritis (RA) by indigenous patients living in southern Alberta, Canada.MethodsWe conducted a qualitative narrative‐based study within a social constructivist framework. Thirteen in‐depth interviews with indigenous patients with RA who had attended 1 of 3 rheumatology practices in southern Alberta (1 rural and 2 urban) were completed. Codes generated through 2 phases of analysis were condensed into main themes, triangulated, and used to produce theoretical statements.ResultsPatients preferred to use a combination of nonpharmacologic and pharmacologic treatments to manage their RA. Nonpharmacologic treatments included physical, mental, emotional, and spiritual strategies. Patients’ preferences for taking medications varied and were influenced by factors that were clinical (i.e., trust in health providers and understanding drugs’ mechanisms of action, benefits, harms, and administration burden), familial (i.e., support), and societal (i.e., access to medications and stigmatization of drug dependency).ConclusionIndigenous patients apply a holistic approach to the nonpharmacologic management of RA. Increases in preferences for RA medications could be supported through enhanced communication strategies to increase patient understanding of medication effects and health provider recognition of societal and familial influences on patient decisions. A patient–provider relationship based on trust was fundamental to reaching mutual understanding and should be fostered by models of practice that promote cultural safety, empathy, compassion, openness, acknowledgment, and respect of cultural differences.

A4 A FRAMEWORK TO STUDY INFLAMMATORY BOWEL DISEASE AMONG INDIGENOUS PEOPLES AND PRELIMINARY RESULTS FROM SASKATCHEWAN, CANADA

Abstract Background Inflammatory Bowel Disease (IBD) is a chronic condition with significant life-threatening disease-related complications and reductions in quality of life if left untreated. Despite available research about IBD in the general population, there is limited-to-no evidence about IBD among Indigenous peoples in Canada and around the world. Aims We aimed to define a collaborative framework, estimate the prevalence and incidence rates of IBD among First Nations in Saskatchewan, Canada, and explore perceptions of IBD among Indigenous peoples in the province. Methods This study began when Indigenous patients shared their health experiences with IBD with research team members. An interdisciplinary research team was formed including Indigenous patient and family advocates (IPFAs, Indigenous patients living with IBD and parents of an Indigenous person with IBD), an IBD gastroenterologist, knowledge users, and Indigenous and non-Indigenous researchers. Our research team committed to raise awareness of IBD among Indigenous peoples within Indigenous communities and among health care providers and to advocate for better healthcare and well-being by providing evidence of IBD among Indigenous peoples living with IBD in Saskatchewan. We defined a mixed methodology. The first phase of the study used Saskatchewan administrative health data to estimate the prevalence and incidence rates with 95% confidence intervals (95%CI) of IBD among First Nations. The second phase of the study will use a photovoice methodology to gather “the voices” of Indigenous peoples with IBD, encouraging self-interpretation of pictures, engaging their communities, and empowering them with the study findings. Results The IPFAs play a critical role in the project by sharing their experiences and defining the directions of the project, as well as defining our research framework (Figure 1). Preliminary results show that the prevalence of IBD among First Nations in Saskatchewan increased from 66 (95%CI 65–68) per 100,000 population in 1999 to 148 (95%CI 145–151) per 100,000 people in 2015. In contrast, the incidence rates appear to be stable over time, 11/100,000 (95%CI 4–24) in 1999 and 11/100,000 (95%CI 5–20) in 2015. We started recruiting participants for the photovoice study in September 2019. Conclusions This ground-breaking patient-driven study is the first stage to improve health among Indigenous peoples living with IBD in Saskatchewan. This project will generate community-engaged knowledge and expertise to inform the development of an Indigenous IBD framework that could promote better and knowledge-based healthcare for Indigenous peoples with IBD in Canada and worldwide. Funding Agencies CIHRSaskatchewan Health Research Foundation (SHRF) and Saskatchewan Centre for Patient-Oriented Research (SCPOR)

Patient survival following renal transplantation in Indigenous populations: A systematic review.

Inequities in health care predispose Indigenous populations to poor health outcomes. The objective of this study was to examine patient survival and other post-transplant outcomes of kidney transplantation among Indigenous patients compared with non-Indigenous populations. A systematic review of MEDLINE, EMBASE, and Google Scholar was undertaken from inception to September 30, 2019, using a computerized search. Publication descriptors and methodological and statistical details were extracted. Articles were assessed using the methodological index for non-randomized studies (MINORS) scale. Twelve studies were included. All studies were retrospective and published between 2004 and 2018. Mean Indigenous patient age was 40 (range: 8-76), while non-Indigenous was 41 (range: 6-74). Mean sample size for Indigenous populations was 398 (range: 24-1459), while for non-Indigenous patients was 1102 (range: 53-7555). Eight studies examined indigenous populations in Australia, two in Canada, one in the United States, and one in New Zealand. All studies were considered of high methodological quality and clinically homogenous. Results indicated that patient survival, graft survival, and delayed graft function were significantly reduced among Indigenous populations compared with non-Indigenous populations. Post-transplant outcomes among various Indigenous populations are significantly worse compared with non-Indigenous populations. The reasons for poor outcomes are likely multifactorial. Improved standardized reporting of transplant outcomes of Indigenous patients is necessary to better inform healthcare services and improve clinical outcomes.

Trust and world view in shared decision making with indigenous patients: A realist synthesis.

IntroductionHow shared decision making (SDM) works with indigenous patient values and preferences is not well understood. Colonization has affected indigenous peoples' levels of trust with institutions, and their world view tends to be distinct from that of nonindigenous people. Building on a programme theory for SDM, the present research aims to refine the original programme theory to understand how the mechanisms of trust and world view might work differently for indigenous patients.DesignWe used a six‐step iterative process for realist synthesis: preliminary programme theory development, search strategy development, selection and appraisal of literature, data extraction, data analysis and synthesis, and formation of a revised programme theory.Data SourcesSearches were through Medline, CINAHL, and the University of Saskatchewan iPortal for grey literature. Medline and CINAHL searches included the University of Alberta Canada‐wide indigenous peoples search filters.Data synthesisFollowing screening 731 references, 90 documents were included for data extraction (53 peer reviewed and 37 grey literature). Documents from countries with similar colonization experiences were included.ResultsA total of 518 context‐mechanism‐outcome (CMO) configurations were identified and synthesized into 21 CMOs for a revised programme theory. Demographics, indigenous world view, system and institutional support, language barriers, and the macro‐context of discrimination and historical abuse provided the main contexts for the programme theory. These inspired mechanisms of reciprocal respect, perception of world view acceptance, and culturally appropriate knowledge translation. In turn, these mechanisms influenced the level of trust and anxiety experienced by indigenous patients. Trust and anxiety were both mechanisms and intermediate outcomes and determined the level of engagement in SDM.ConclusionThis realist synthesis provides clinicians and policymakers a deeper understanding of the complex configurations that influence indigenous patient engagement in SDM and offers possible avenues for improvement.

\u2018We\u2019re here to listen and help them as well\u2019: a qualitative study of staff and Indigenous patient perceptions about participating in social and emotional wellbeing research at primary healthcare services

BackgroundResearch can inform culturally-appropriate care to strengthen social and emotional wellbeing (SEWB) among Aboriginal and Torres Strait Islander (hereafter, the term ‘Indigenous Peoples’ is respectfully used and refers to all Aboriginal and/or Torres Strait Islander Peoples of Australia). We acknowledge the cultural diversity of Australia’s Indigenous First Peoples and they do not represent a homogenous group.) (hereafter Indigenous) Peoples. We explore the perspectives of primary healthcare staff and Indigenous patients about their willingness to and experiences participating in SEWB research.MethodProcess evaluation using grounded theory approaches of Getting it Right: The validation study, a national validation designed Indigenous SEWB research project (N = 500). Primary healthcare staff (n = 36) and community members (n = 4) from nine of ten primary healthcare services involved with the research project completed qualitative semi-structured interviews. Interview data were triangulated with participant feedback (responses to structured questions and free-text feedback collected during Getting it Right), study administrative data (participant screening logs, communication logs, study protocol, deviation logs and ethics correspondence) and interviewer field notes.ResultsThree themes about staff, patient and community perspectives concerning research participation developed: (1) considering the needs, risk, preferences and impact of participation in research for staff, patients and community; (2) building staff confidence speaking to patients about research and SEWB problems and (3) patients speaking openly about their SEWB. Some staff described pressure to ensure patients had a positive experience with the research, to respond appropriately if patients became upset or SEWB problems were identified during interviews, or due to their dual role as community member and researcher. Patients and staff reported that patients were more likely to participate if they knew the staff outside of the service, especially staff with a shared cultural background, and they perceived SEWB as a community priority. Staff reported their skills speaking to patients about the research and SEWB improved during the research, which built their confidence. Contrary to staff preconceptions, staff and patients reported that many patients appreciated the opportunity to speak about their SEWB and contributing to research that may eventually enhance SEWB in their community.ConclusionOur research project was considered acceptable by most staff and patients. The positive outcomes reported by staff and feedback from patients highlights the importance of providing opportunities for people to speak about their SEWB and for research-informed SEWB PHC care.Trial registrationGetting it Right is registered on ANZCTR12614000705684.