Models of care to address disparities in kidney health outcomes for First Nations people

Abstract

First Nations people of Australia, New Zealand, Canada, and the United States of America (USA) share a common history of European colonisation with forced disconnection from land, community, and culture. While reconciliation strategies differ between the four nations, lasting colonial effects of institutional racism, disproportionate social disadvantage and disparities in health outcomes persist. Decades of consultation with First Nations communities evaluating the problem and government interventions aimed at addressing this disparity have yielded little improvement. Chronic kidney disease (CKD) represents a particular challenge when considering the burden of ill-health amongst First Nations people. First Nations people are more likely to develop kidney failure and are less likely to receive a kidney transplant than their non-Indigenous peers. Treatment of kidney failure requires a high level of engagement with mainstream health services, which can be hostile and discriminatory environments. As part of the evidence synthesis to inform an inaugural guideline on clinically and culturally safe management of CKD for First Nations Australians1Tunnicliffe D, Bateman S, Arnold-Chamney M, et al. Recommendations for culturally safe and clinical kidney care for First Nations Australians. Sydney, Australia: CARI Guidelines. 2022. Available from: https://www.cariguidelines.org/first-nations-australian-guidelines/.Google Scholar, this review aimed to identify studies that delivered First Nations specific health interventions that included, or could be embedded, as models of care to improve health outcomes for First Nations people with kidney failure in Australia, New Zealand, Canada and the USA. This work was informed by an extensive process of First Nations community consultation2Hughes J, Mick-Ramsamy L, Mills P, et al. Summary report, Darwin, catching some air–asserting Aboriginal and Torres Strait Islander information rights in renal disease. Darwin: Menzies School of Health Research. 2018. Available at: https://www.menzies.edu.au/icms_docs/307210_Catching_Some_Air.pdfGoogle Scholar,3Kelly J. Stevenson T. Arnold‐Chamney M. et al.Aboriginal patients driving kidney and healthcare improvements: recommendations from South Australian community consultations.Australian and New Zealand Journal of Public Health. 2022; 46: 622-629Crossref PubMed Scopus (0) Google Scholar,4Kidney Health Australia. Executive Summary ‘Yarning Kidneys’ Community Consultations. Melbourne, Victoria. 2020. Available at: https://kidney.org.au/get-involved/advocacy/aboriginal-and-torres-strait-islander-peoples-1Google Scholar and prioritised First Nations governance and research methodologies (Appendix 1). First Nations specific quality appraisal tools5Harfield S. Pearson O. Morey K. et al.Assessing the quality of health research from an Indigenous perspective: the Aboriginal and Torres Strait Islander quality appraisal tool.BMC medical research methodology. 2020; 20: 1-9Crossref Scopus (89) Google Scholar,6Huria T. Palmer S.C. Pitama S. et al.Consolidated criteria for strengthening reporting of health research involving indigenous peoples: the CONSIDER statement.BMC medical research methodology. 2019; 19: 1-9Crossref PubMed Scopus (141) Google Scholar were used in addition to Cochrane methods to comprehensively critique the quality of evidence. To ensure adherence to the ethical principle of First Nations self-determination7Australian Institute of Aboriginal and Torres Strait Islander Studies. AIATSIS code of ethics for Aboriginal and Torres Strait Islander research. 2020. Available at: https://aiatsis.gov.au/sites/default/files/2020-10/aiatsis-code-ethics.pdf.Google Scholar, consistency of the evidence with well-established First Nations community voice2Hughes J, Mick-Ramsamy L, Mills P, et al. Summary report, Darwin, catching some air–asserting Aboriginal and Torres Strait Islander information rights in renal disease. Darwin: Menzies School of Health Research. 2018. Available at: https://www.menzies.edu.au/icms_docs/307210_Catching_Some_Air.pdfGoogle Scholar,3Kelly J. Stevenson T. Arnold‐Chamney M. et al.Aboriginal patients driving kidney and healthcare improvements: recommendations from South Australian community consultations.Australian and New Zealand Journal of Public Health. 2022; 46: 622-629Crossref PubMed Scopus (0) Google Scholar,4Kidney Health Australia. Executive Summary ‘Yarning Kidneys’ Community Consultations. Melbourne, Victoria. 2020. Available at: https://kidney.org.au/get-involved/advocacy/aboriginal-and-torres-strait-islander-peoples-1Google Scholar was considered when grading certainty. The full systematic review, including methods (Appendix 2) and complete results (Appendices 3-5) are in the supplementary document. From a comprehensive systematic review considering all health care interventions specific to this population we identified only 8 models of care, evaluated by 14 studies (Supplementary Figure S3.1) specific to First Nations people living with kidney disease (Table 1S1-S14). Study quality through a First Nations lens was variable (Figure 1). Risk of bias in quantitative studies ranged from moderate to critically high. Quality of qualitative and economic studies was fair. Full details of study quality are in Appendix 4.Table 1Study characteristicsStudyStudy design and settingParticipantsStudied Model of CareOutcomes measuredAnderson 2020S1Qualitative studyNative American living in tribal communities across a Northern Plains state in the USA55 Native Americans currently undergoing dialysis treatment at one of three dialysis centres either on or near reservations who had been exposed to the "Hope and Healing" campaign“Hope and Healing” co-created, culturally sensitive health education and promotion campaign (video and booklet) around living kidney donor transplantationFrequency, content, and consequences of patients’ discussions regarding living kidney donation.Britt 2020S2Community-based participatory action researchOnline community199 social media posts targeted at Native Americans with kidney failure, their families and communities“Sharing Hope and Healing”, a co-created, culturally sensitive health education and promotion, social media campaign around living kidney donor transplantationDegree of engagement with campaign; enablers of engagement.Cho 2014S3Retrospective cohort studyRegional renal unit, Cairns, Queensland75 Aboriginal and/or Torres Strait Islander patients who received a PD catheter inserted using the Y-Tec peritoneoscopic techniqueMultidisciplinary team approach including an Aboriginal Liaison Officer; Nephrologist inserted Tenckhoff cathetersPeritoneal dialysis catheter and technique survival ratesEarly dialysis complication ratesReturn to Homelands ratesConway 2018S4Qualitative interview studyRegional and remote South Australia (SA)15 Aboriginal and/or Torres Strait Islander patients who have had to relocate off country for dialysis.10 nursing staff who have worked on the mobile dialysis unitMobile dialysis unit (dialysis bus / truck)Patient and staff thoughts and opinions regarding the mobile dialysis service; enablers and disablers of successful service.Dingwall 2021S5Randomised controlled trial (3 arm)Urban dialysis unit, NT, Australia156 adult Aboriginal and/or Torres Strait Islander patients receiving maintenance HD for more than 6 months.Stay Strong Wellbeing App: a First Nations specific, culturally adapted, digital application (App) of strength-based, patient centred, low-intensity psychological therapy, empowering First Nations cultural values and self-management adapted for the kidney failure setting and presented in local First Nations languages.Changes in degree of psychological distress (Kessler Psychological Distress Scale) and depression (Patient Health Questionnaire-9)Gorham 2019S6Micro costing analysisWhole of renal service, NT, AustraliaAll patients receiving dialysis in the NT, AustraliaCommunity controlled, nurse supported, remote area dialysis serviceCost effectivenessGorham 2021S7Cost analysisWhole of renal service, NT, AustraliaAll patients in the NT who received dialysis for more than three months continuously.8 patients excluded due to absence of cost data.Community controlled, nurse supported, remote area dialysis serviceCost effectivenessKirkham 2019S8Participatory Action ResearchUrban dialysis services, NT, Australia6 Aboriginal and/or Torres Strait Islander patients requiring maintenance HD who resided in DarwinFirst Nations reference group integrated into kidney health services through direct feedback loops to health service leadership and policy steering committeeDegree of stakeholder participation and health service responsivenessMarley 2010S9Retrospective registry cohort studyRegional/remote dialysis unit, Western Australia (WA)110 Aboriginal and/or Torres Strait Islander patients; Kimberley origin221 Aboriginal and/or Torres Strait Islander patients; rest of WA502 Aboriginal and/or Torres Strait Islander patients; NT origin733 Aboriginal and/or Torres Strait Islander patients; rest of Australia13273 Non-Indigenous AustraliansCommunity controlled, nurse supported, remote area dialysis serviceMortalityMarshall 2013S10Retrospective registry cohort studyUrban dialysis services, NZ4,709 incident adult patients on dialysis in NZ. 34.5% Māori.Community-based home haemodialysis: urban house, owned and maintained by patient support group, with home dialysis machines used by patients. Accessible to patients and families.MortalitySicotte 2011S11Interrupted time series cohort studyRemote Cree communities, James Bay region, Canada.19 adult Cree residents of two remote communities receiving conventional HD for at least nine months (pre) and tele-haemodialysis for at least another nine months (post)Primary care supported tele-haemodialysis service where consultation between nephrologist and patient is conducted via videoconference, supported by on-site dialysis nurse or general practitioner.Dialysis attendanceMedication changesMedical evacuation ratesMortalityThomas 2002S12Community-based participatory action researchSalt River Council Region, USANot reportedOrgan Donation and Kidney Transplant Education Committee of community members, clinicians and government/council stakeholders which designed culturally sensitive educational materials and trained tribal members to disseminate the information.Health care provider reflectionsTreacy 2002S13Interrupted time series cohort studyUrban hospital, NT, Australia161 HD patients who underwent AVF surgery during the study period.74.5% Aboriginal and/or Torres Strait Islander.Multidisciplinary vascular access team. No Aboriginal and/or workforce role.AVF patency and revision ratesWalker 2019S14Qualitative interview studyUrban community HD units, NZ25 kidney failure patients who had received or were receiving community house HD.40% MāoriCommunity-based home haemodialysis: urban house, owned and maintained by patient support group, with home dialysis machines used by patients. Accessible to patients and families.Thoughts and opinions of patients regarding the community-based home haemodialysis modelNotes: HD; haemodialysis, PD; peritoneal dialysis, AVF; Arteriovenous fistula, NT; Northern Territory, WA; Western Australia, SA; South Australia, NZ; New Zealand, USA; United States of America. Open table in a new tab Notes: HD; haemodialysis, PD; peritoneal dialysis, AVF; Arteriovenous fistula, NT; Northern Territory, WA; Western Australia, SA; South Australia, NZ; New Zealand, USA; United States of America. Community controlled, nurse supported, remote area dialysis Clinical effectiveness and cost effectiveness of community controlled, nurse supported, remote area dialysis models were assessed in three Australian studiesS6, S7, S9 (Table 2). Marley 2010S9 found this model of dialysis care was safe, with no mortality difference for 110 Aboriginal and/or Torres Strait Islander patients receiving remote area dialysis when compared to all Aboriginal and/or Torres Strait Islander patients (adjusted mortality ratio (AMR) 1.05 (95% CI 0.91-1.21)) and to non-Indigenous Australians (AMR 0.8 (95% CI 0.51-1.23)). Gorham 2021S7 established that higher median costs of treatment/patient/year of remote dialysis are offset by lower hospital costs resulting in lower per patient health expenditure. The greatest cost saving was $15,118/patient/year for very remote dialysis model compared to relocation to an urban dialysis facility.Table 2Summary of findingsModels of Care for First Nations people living with kidney diseaseStudies contributingRisk of Bias (tool used)First Nations quality assessmentCoherence/ ConsistencyImprecision/ AdequacyDirectness/ RelevanceCertainty of evidenceCommunity controlled, nurse supported, remote area dialysis models are clinically safe, with no mortality disadvantage, and allow people to have dialysis on their Homeland.Marley 2010Moderate (ROBINS-I)No concernsFinding consistent with community voice1 safety study (Australia)Very LowCommunity controlled, nurse supported, remote area dialysis models are cost effective when total health expenditure is considered.Gorham 2021No concerns (CHEERS)No concernsFinding consistent with community voiceLowGorham 2019No concerns (CHEERS)No concernsUrban community-based home haemodialysis is a safe model, which does not increase mortality when compared to conventional home haemodialysis.Marshall 2013Moderate (ROBINS-I)Some concerns#Variable First Nations populations; no subgroup analysisVery LowUrban community-based home haemodialysis is acceptable to First Nations communities and may reduce the treatment burden of in-centre dialysis.Walker 2019No concerns (COREQ)Some concerns1 study (NZ)Variable First Nations populations; no subgroup analysisVery lowAdopting a primary care supported, telehealth model of dialysis care does not lead to health disadvantage in term of clinical outcomes or mortality. Telehealth should be considered as an option to augment traditional face-to-face care.Sicotte 2011Moderate (ROBINS-I)Concerns#Finding consistent with community voice1 study (Canada)Study in remote Cree patients onlyVery lowMobile dialysis units may facilitate return to Homelands and have important psychosocial benefits for patients and community. However, successful uptake of mobile dialysis requires local accommodation, transport, and sufficient workforce support.Conway 2018Some concerns (COREQ)Concerns#Finding consistent with community voice1 study (Australia)Very lowIncluding First Nations health workers within dedicated multidisciplinary teams may improve outcomes for First Nations people commencing dialysis beyond standard care.Cho 2014Critical (ROBINS-I)Significant concerns#Finding consistent with community voice1 study (Australia)LowThe delivery of culturally adapted, First Nations specific, social and emotional wellbeing programs to patients who are on dialysis may decrease distress and improve wellbeing.Dingwall 2021High (RoB2)No concernsFinding consistent with community voice1 study (Australia)ModerateIncorporating First Nations feedback directly into mainstream renal service policy and planning allows for meaningful First Nations consumer driven change and improves health service responsiveness and professional capacity building.Kirkham 2019No concerns (COREQ)No concernsFinding consistent with community voice1 study (Australia)ModerateCommunity based education and awareness campaigns that are co-created with First Nations communities can increase community awareness and acceptance of transplantation, including living and deceased kidney donation.Thomas 2002Unable to be assessedSome concerns#Finding consistent with community voiceModerateBritt 2020Unable to be assessedSome concernsAnderson 2020Some concerns (COREQ)Some concernsNotes: #; studies published prior to availability of quality appraisal tool, ROB2; Risk of Bias 2 tool (randomised studies), ROBINS-I; Risk Of Bias In Non-randomised Studies of Interventions (non-randomised studies), COREQ; Consolidated Criteria for Reporting Qualitative Research (qualitative studies), CHEERS; Consolidated Health Economic Evaluation Reporting Standards (economic evaluations) Open table in a new tab Notes: #; studies published prior to availability of quality appraisal tool, ROB2; Risk of Bias 2 tool (randomised studies), ROBINS-I; Risk Of Bias In Non-randomised Studies of Interventions (non-randomised studies), COREQ; Consolidated Criteria for Reporting Qualitative Research (qualitative studies), CHEERS; Consolidated Health Economic Evaluation Reporting Standards (economic evaluations) Urban, community-based, home haemodialysis was assessed by two studiesS10, S14. This model addressed barriers to home dialysis, including inadequate housing and/or utilities, by home dialysis in a supported mortality compared to dialysis models and (Table 2). an of the model to conventional home haemodialysis (AMR (95% CI and lower than haemodialysis (AMR (95% of burden on and health and community with the tele-haemodialysis model consultation between nephrologist and patient is conducted via videoconference, supported by on-site dialysis nurse or general was evaluated in a time series study across two remote First Nations was no in quality of care with of the model, no and no difference in dialysis or hospital was in to at the where the model was supported by a and staff of a mobile dialysis unit was evaluated in one Australian This model return to traditional for patients for and quality of and with of the model of accommodation, transport, and sufficient workforce The benefits of a multidisciplinary dialysis access team approach considered in centres as a standard of for First Nations people commencing dialysis in an urban was considered in two Australian studies from and First Nations health care workers within the team. studies an in clinical AVF patency and peritoneal catheter survival consistent with the benefits in the general The benefits by beyond standard clinical to the of culturally dialysis established and with remote primary health care and a of patients to their home communities an time of assessed the effectiveness of a culturally adapted, First Nations specific wellbeing digital application for in First Nations people on dialysis in Australia. The used an of psychological for in remote Australian First Nations The approach First Nations cultural and values and patient was adapted to the kidney failure population and in local First Nations The had a for with of psychological distress at with a clinically in to depression at months difference and 6 months difference and psychological distress at 6 months difference qualitative study addressed cultural responsiveness of health in Northern In this model a First Nations reference group had direct access to health service leadership through a feedback First Nations opinions and were by reference group members, to the health service steering that direct of First Nations in policy and planning for First Nations change and health responsiveness and professional capacity were three of community health promotion campaigns aimed at the of for First Nations people in the USA. model (video and social media campaign; of community all had a consistent approach of and delivery with First Nations study outcomes with a common of awareness of resulting from the of First Nations people have the of kidney failure on their the communities have identified and which addressing First Nations health workforce and culturally safe care to home (Figure 2). the established that of kidney care to the of First Nations studies of models of care addressing First This review identified only 14 studies of models of care, with variable study Study quality through a First Nations lens in community consultation and in study design and persist. The of in of ethical First Nations research to and is to research this work is an extensive process of consultation with First Nations J, Mick-Ramsamy L, Mills P, et al. Summary report, Darwin, catching some air–asserting Aboriginal and Torres Strait Islander information rights in renal disease. Darwin: Menzies School of Health Research. 2018. Available at: https://www.menzies.edu.au/icms_docs/307210_Catching_Some_Air.pdfGoogle Scholar, J. Stevenson T. Arnold‐Chamney M. et al.Aboriginal patients driving kidney and healthcare improvements: recommendations from South Australian community consultations.Australian and New Zealand Journal of Public Health. 2022; 46: 622-629Crossref PubMed Scopus (0) Google Scholar, Health Australia. Executive Summary ‘Yarning Kidneys’ Community Consultations. Melbourne, Victoria. 2020. Available at: https://kidney.org.au/get-involved/advocacy/aboriginal-and-torres-strait-islander-peoples-1Google The results are consistent with the are common across all were by the models of care identified in this emotional and cultural wellbeing of First Nations of people to one another to their Aboriginal Research of the South Australian Health and Research and Quality Health Standards for Aboriginal and Torres Strait Islander Australian on and Quality in Health Sydney, Australia. Available at: addressing the for treatment to be to home community controlled, remote dialysis mobile dialysis services and community-based home were found to be safe, and/or acceptable to staff and patients. and mainstream health services to health outcomes for First Nations people. Health service be First and culturally to and of services within health services to the principle of communities to their health and allow for service in a culturally safe First Nations reference into mainstream health services with direct access health service leadership and on health care policy and planning improves health service This direct and integrated approach an for meaningful First Nations consumer driven the and of First Nations health workers been as a for care for First Nations people the of First Nations team members been to improve the cultural safety of the health the of their within multidisciplinary kidney care teams not been First Nations health workers as and members of multidisciplinary dialysis and transplant the to with First Nations communities is likely to be and outcomes First Nations people have and in with an burden of within their communities and in and health that are and The psychological and emotional distress with kidney failure and dialysis, are addressed through programs by and for First Nations people. First Nations specific programs into care, beyond is currently is to the that disease on the community. First Nations people living with kidney failure are in as a treatment the of studies considered models of care designed to improve access to or outcomes of for First Nations and social media health promotion campaigns had a in awareness of kidney transplantation, living donor transplantation, American results of a to be published health service in New Zealand of living kidney M. Kidney Donation Kidney Donation in Indigenous and in South New 2019; Scholar, and we In Australia, the Indigenous Kidney is to cultural bias and to improve patient and M. K. S. indigenous kidney an Journal of Scholar, is to on the of this we that the for this review from consultation with First Nations communities, of the research team are non-Indigenous and to the First Nations were in part of the research design and process and the research team worked to First Nations research capacity within the synthesis and were to a First Nations community reference group for The research team is based in Australia and First Nations team members are Aboriginal and/or Torres Strait the in and to First Nations communities, we are that the can be adapted to local and to improve the care of First Nations people of only were excluded from synthesis due to a of bias with this The barriers studies from to review and be and addressed to ensure in research for First Nations The of colonisation for First Nations communities and the health including kidney failure, are This review found First Nations specific studies of models of care to improve the from community for The evidence to culturally care, First Nations the psychological of disease and of kidney as a treatment option as of the by First Nations people of the of research is not as and health care we Health care services and research and support First research of co-created First studies to the greatest for First Nations people. the First Nations people of Australia, New Zealand, Canada and the who of the used within this review and who are of the on which and we and the reference group for their to this work and for their to the of their through their and Kidney Health Australia and the for Australians and New with Kidney for their to the and for this with This been presented in at the American of Kidney and the Australian and New Zealand of 2022.

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