BackgroundIndigenous populations experience a higher prevalence of dementia compared to non-Indigenous populations. Brain Health PRO is a web-based educational program designed to increase knowledge around dementia risk factors and help create lifestyle changes. The purpose of this study is to understand whether Brain Health PRO is relevant to Métis communities in Alberta, Canada.MethodsMétis participants were recruited across Alberta and interviews were completed using the Métis visiting methodology (Keeoukaywin). Data were co-analysed using Indigenous approaches to reflexive thematic analysis.ResultsSixty-three interviews with 20 participants were completed between April and November 2024. The analysis generated two main themes which suggest the overall design and delivery of Brain Health PRO are not culturally relevant for Métis people in Alberta. The first theme, “Promoting Métis knowledge systems” was demonstrated through discussions of the seven components of Brain Health PRO (physical health, cognitive engagement, nutrition, sleep, social and psychological health, vascular health, and vision and hearing), and how these components excluded traditional Métis knowledge. The second theme, “Holistic approaches to risk reduction” described the how Métis knowledge could influence the way each component is presented and understood together in a Métis worldview. The subthemes were: importance of interaction and balance of multiple components; benefits of in-person program delivery; brain health promotion across the lifespan; accessing resources; and the legacy of colonization.DiscussionThough the seven components of Brain Health PRO may be useful for Métis people, the content and delivery of these components lacked Métis knowledge and worldviews. In-person engagement with Métis communities is a crucial next step to co-develop resources that are culturally appropriate.

Background/Objectives: Longer lifetime exposure to endogenous estradiol (LEE2) has been associated with lower risk of age-related cognitive decline and dementia. Complementary to cognitive decline, behavioral and functional decline are also predictive of dementia risk; however, the association between LEE2 and these domains is underexplored. We investigated whether LEE2 is correlated with later-life changes in behavior and function. Methods: Baseline data from 1156 females enrolled in the CAN-PROTECT study were analyzed. LEE2 was estimated based on the length of the reproductive period (menopause age-menarche age) plus years pregnant and scaled in 5-year increments. Objective cognition was measured using the CAN-PROTECT neuropsychological battery, while subjective cognition, behavior, and function were measured using the Revised Everyday Cognition (ECog-II) scale, Mild Behavioral Impairment Checklist (MBI-C), and Standard Assessment of Global Everyday Activities (SAGEA) scale, respectively. Linear regressions modeled the association between LEE2 and neuropsychological performance. Three separate negative binomial regression models examined the association between LEE2 and ECog-II, MBI-C, and SAGEA total scores. All models adjusted for menopause hormone therapy, menopause type, age at first childbirth, body mass index, age, education, and ethnocultural background. Results: Each five-year increase in LEE2 was associated with a lower MBI-C score (count ratio [CR] = 0.89, 95% CI [0.82, 0.97]) and lower SAGEA score (CR = 0.91, 95% CI [0.84, 0.98]). LEE2 was not significantly associated with any objective or subjective cognitive measures. Conclusions: Longer LEE2 may associate with lower severity of later-life behavioral and functional symptoms in older women.

Current models of dementia care often perpetuate the legacies of colonization, which highlights the need for a culturally congruent approach. This research describes the necessary components to co-develop a freely available Indigenous-centered dementia model of care in partnership with Indigenous individuals living with dementia, their families, and communities. To prioritize ethical and decolonial research approaches, sequential focus groups were used alongside Keeoukaywin (The Visiting Way)-an Indigenous methodology deeply rooted in Métis and Cree ways of knowing-guided by a group of advisors and Elders. The data were co-analyzed using reflexive thematic analysis guided by Indigenous principles. Three themes were generated: Indigenization, Personalization, and the Intersection of Challenges and Innovations, to illustrate how dementia care can be operationalized and adapted to various cultural and care contexts. This research offers a foundation for developing dementia care that truly aligns with Indigenous ways of doing.

INTRODUCTION:Quality of life (QoL) captures objective life conditions, subjective wellbeing, and personal aspirations. Interest is growing in ability-based, patient-centered instruments, not confounded by health outcomes. The Quality of Life and Function Five Domain Scale (QFS-5) uses a multi-dimensional approach to measure QoL emphasizing abilities and life engagement. We describe the development and validation of the QFS-5 in a large sample of community-dwelling older adults. METHODS:The validation sample comprised 1610 participants aged ≥ 50 from the Canadian Platform for Research Online to Investigate Health, Quality of Life, Cognition, Behavior, Function, and Caregiving in Aging (CAN-PROTECT). Internal consistency was assessed using Cronbach's alpha and item-total correlations. Confirmatory factor analysis (CFA) evaluated domain structure. Criterion validity was tested through Pearson's correlation with the EuroQol-5D (EQ-5D). Convergent and discriminant validity were evaluated from associations with cognitive, mental health, and functional measures. Floor and ceiling effects were investigated. RESULTS:The QFS-5 demonstrated excellent internal consistency (α = 0.92); CFA supported the proposed domain structure with strong item loadings. Criterion validity was confirmed with correlation of -0.61 against the EQ-5D; higher symptom burden on related scales were associated with lower QFS-5 scores. Floor effects were minimal, while modest ceiling effects were observed in some domains. No significant floor or ceiling effects were found in participants with frailty. CONCLUSION:Validity and reliability are established for this ability-based QoL scale, within a sample of mostly cognitively unimpaired, community-dwelling older adults. The QFS-5 aligns with EQ-5D, demonstrating potential clinical and research utility to measure relevant patient-reported QoL outcomes.

BackgroundFamily and friend care partners play a vital role in supporting individuals with neurocognitive disorders, such as Alzheimer's disease dementia. Care partners are often uncompensated and face multifaceted challenges that contribute to stress. The Care Partner Stress Scale (CPSS) was developed to assess caregiver stress across seven domains: cognition, behavior, function; unmet needs and emotional impact; work and financial strain; family and interpersonal conflict; and situational perception.ObjectiveTo evaluate psychometric properties of the CPSS in care partners of individuals with neurocognitive or neurodegenerative diseases of aging.MethodsThe CPSS was completed by 168 (83.93% female, age = 61.98 years) care partners in the CAN-PROTECT online cohort. Participants completed measures of depression, anxiety, quality of life, function, loneliness, and life satisfaction and engagement. We assessed internal consistency, item-total correlations, convergent and discriminant validity, and floor/ceiling effects.ResultsThe CPSS demonstrated excellent internal consistency (α = 0.95, 95% CI: 0.94-0.96), with item-total correlations >0.23. Higher CPSS scores were associated with greater depression (b = 2.38, 95%CI [0.72, 4.03], p = 0.005), anxiety (b = 4.47, 95%CI [2.44, 6.50], p < 0.001), and anxious distress (b = 6.37, 95%CI [3.54, 9.21], p < 0.001), as well as lower life satisfaction (b = -3.42, 95%CI [-5.61, -1.23], p = 0.002), poorer social relationships (b = -2.31, 95%CI [-4.54, -0.09] p = 0.042), greater loneliness (b = 5.26, 95%CI [1.33, 9.19], p = 0.009), and poorer life engagement (b = 2.89, 95%CI [1.23, 4.65], p = 0.001). CPSS scores were not associated with self-care (b = -1.06, 95%CI [-5.03, 2.92], p = 0.600). Floor effects were minimal (0.60%), with no ceiling effects.ConclusionsFindings provide initial support for multidimensional assessment of care partner stress in neurocognitive disorders.

Dementia prevalence in Indigenous populations worldwide is increasing at disproportionately higher rates compared to non-Indigenous populations, and current care systems are insufficient. This project developed a foundational understanding of Indigenous-centered approaches to dementia care provision in Alberta, Canada. Using a Métis Indigenous visiting methodology (Keeoukaywin), qualitative semi-structured interviews were completed with 12 participants, including Indigenous People living with dementia, care partners, and community members. Reflexive thematic analysis was used to generate a framework from the data. The analysis generated three key themes: relationality, being well, and safety, intersecting across social, cultural, and physical subthemes. Important aspects included embodied relationality, being well holistically, social relationships and culture, and stigma awareness surrounding dementia. Consideration of cultural safety was mentioned by all participants. Centering the voices of Indigenous People is crucial to inform the development of dementia care interventions that are culturally appropriate to lead to improved health outcomes.

BACKGROUND:Indigenous peoples have inequitable health access and outcomes yet are under-represented in health research and policy. The Intersectoral Global Action Plan on Epilepsy and other Neurological Disorders 2022-2031 highlights Indigenous peoples as high priority groups. We aimed to provide a summary of existing knowledge regarding epilepsy among Indigenous peoples in Canada, Australia, New Zealand, and the USA (CANZUS). METHODS:In this systematic scoping review, we searched Embase, MEDLINE, APA PsychInfo, Cochrane, Scopus, CINAHL databases and grey literature for reports published in any language between Jan 1, 1985, and April 16, 2023, using search terms related to seizures, epilepsy, and Indigenous peoples. Studies were assessed independently by three reviewers. Articles including epilepsy data in an Indigenous group were included. Articles were excluded if they combined Indigenous and non-Indigenous peoples as one population or if the outcomes did not include a separate analysis by Indigenous group. Case reports were also excluded. We extracted data on epilepsy epidemiology, access to health care, treatment, and health outcomes in Indigenous people. The methodological quality of studies was assessed through a methodological appraisal and an Indigenous perspective appraisal. This study is registered with Open Science Framework, https://doi.org/10.17605/OSF.IO/9JRHG. FINDINGS:Our search identified 2037 studies, of which 42 peer-reviewed articles and nine grey literature reports met inclusion criteria: these studies were in Canada (n=3), Australia (n=17), New Zealand (n=9), and the USA (n=22). With the exception of Māori children in New Zealand, who seem to have similar rates of epilepsy to children of European ancestry, the incidence and prevalence of epilepsy seemed to be higher in Indigenous peoples in these regions than non-Indigenous populations. In the included studies, Indigenous peoples showed a higher number of epilepsy hospital presentations, decreased access to specialists, decreased access and longer waits for antiseizure medication, and increased prescriptions for enzyme-inducing antiseizure medications when compared with non-Indigenous peoples. In Australia, the number of disability-adjusted life years among Aboriginal and Torres Strait Islander peoples with epilepsy was double that for non-Indigenous people with epilepsy. Mortality rates for Indigenous peoples with epilepsy in New Zealand and Australia were higher than in non-Indigenous people with epilepsy. INTERPRETATION:Although Indigenous people from CANZUS have unique cultural identities, this review identified similar themes and substantial disparities experienced by Indigenous versus non-Indigenous people in these nations. Concerningly, there were relatively few studies, and these were of variable quality, leaving substantial knowledge gaps. Epidemiological epilepsy research in each specific Indigenous group from CANZUS countries is urgently required to enable health policy development and minimise inequity within these countries. FUNDING:Health Research Council of New Zealand.

Current evidence favours a shift away from pharmacological to non-pharmacological approaches for the prevention and management of non-cognitive symptoms of dementia. With the limited effectiveness of pharmacological treatments and their risk of adverse effects, it is imperative to understand the effectiveness of non-pharmacological approaches to dementia care and lived experience. However, there has been little work to date to adapt non-pharmacological approaches in partnership with Indigenous people. The current model of dementia care is unsafe and inadequate and continued inaction will only lead to continued harm. The primary aim of this research was to develop an implementation-ready approach to Indigenous-centered dementia care that has been co-designed with partnering Indigenous communities. This study prioritized ethical engagement with Indigenous community members. Participants were recruited through community social media and newsletters. Data were co-analysed using Indigenous approaches to thematic qualitative analysis to draft a preliminary structure for the Indigenous-centred dementia care approach. A modified Nominal Group Technique was held with a group of health care providers and decision makers that led to agreement on content and design, as well as the development of training materials for facilitators. Four focus groups (five Indigenous participants with experience of dementia/group) were completed between October and December 2024 for participants to discuss potential content and modes of delivery of an Indigenous-centred dementia care intervention. Participants identified the need for: 1) culturally-specific brain health education that includes information on what dementia is; 2) Indigenous-specific risk identification and dementia prevention; 3) dementia-friendly Indigenous cultural and spiritual ceremonies; 4) programs for community and facility-living seniors that involved the traditions of local Indigenous Nations (e.g. jigging, beading, etc); and 5) in-depth training for staff to deliver the programming. This work will impact numerous populations that need culturally specific approaches to dementia care policy and planning by informing an ethical process to engaging with diverse populations. This work can help health and continuing care services provide community-specific approaches to non-pharmacological dementia care.

The quality of culturally appropriate brain health promotion materials Indigenous people in Canada is lacking. Canada's National Dementia Strategy calls for additional work to improve brain health promotion and dementia prevention for Indigenous people as a priority. Health promotion and healthy brain aging for Indigenous communities also needs to be understood in a distinctions-based and culturally specific way. Providing brain health promotion materials that are strengths-based, while also being grounded in Indigenous knowledge systems and experiences is an urgent priority in Canadian health systems and plays an important part in enhancing patient safety and closing gaps in health inequities. The primary outcome of this project was to develop understanding regarding how the Brain Health Pro can be adapted to a Métis context in the province of Alberta, Canada. Our overarching ethical approach embeds integrated knowledge translation into the development and implementation of brain health promotion material so that the research outcomes are directly applicable and useful to communities. Interviews were completed using the Métis visiting methodology (Keeoukaywin) to allow for the emergence of new themes. Data was co-analysed using Indigenous approaches to thematic qualitative analysis. Twenty Métis people in Alberta participated in a total of 63 interviews between July and November 2024. Participants felt that the current content and mode of delivery of Brain Health Pro was not appropriate for Métis people living in Alberta. Themes included a western dominance of brain health (including a lack of Indigenous people in the video content, no Métis Ways of Knowing; a lack of non-virtual options (for those who may not have reliable internet access); and a need for holistic approaches to risk reduction (e.g. berry picking could provide physical activity, social interaction and healthy traditional food options and be an avenue for intergenerational knowledge mobilization). The work will be developed to facilitate spread, scale and adaption to other local Indigenous contexts. Additionally, the principles and methodology may be applied internationally to develop locally driven and culturally specific dementia care intervention for Indigenous populations or other underrepresented populations.

People living with dementia (PLWD) were disproportionately impacted by the COVID-19 pandemic, experiencing high mortality rates in the initial waves. However, factors contributing to their increased risk of death following COVID-19 infection remain unclear. Given that PLWD are a heterogenous population with varying susceptibility to negative health outcomes, this study aimed to identify independent factors associated with 30-day COVID-19 mortality among PLWD and vulnerable subgroups of PLWD. We conducted a retrospective cohort analysis using administrative data from March 1st 2020 to December 1st 2020, in Alberta, Canada. We examined the association between an outcome variable created to examine mortality in the 30-days following COVID-19 infection and factors related to the demographics and health (e.g., age, comorbidities), health service use (e.g., past physician utilization), and environment (e.g., community or long-term care) of PLWD in our study cohort and subgroups of our study cohort based on age, sex, and living setting (community, long-term care). Among our study cohort of PLWD (N = 1526), 28

INTRODUCTION: Quality of life (QoL) captures objective life conditions, subjective wellbeing, and personal aspirations. There is growing interest in ability-based, patient-centred instruments that are not confounded by health outcomes. The Quality of Life and Function Five Domain Scale (QFS-5) applies a multi-dimensional approach to measurement of QoL with a focus on abilities and life engagement. METHODS: The QFS-5 was validated in 1610 participants aged ≥ 50 from the Canadian Platform for Research Online to Investigate Health, Quality of Life, Cognition, Behaviour, Function, and Caregiving in Aging (CAN-PROTECT). Internal consistency was assessed using Cronbach′s alpha and item-total correlations. Confirmatory factor analysis (CFA) evaluated domain structure. Criterion validity was tested through Pearson′s correlation with the EuroQol-5D (EQ-5D). Convergent and discriminant validity were evaluated from associations with cognitive, mental health, and functional measures. Floor and ceiling effects were investigated. RESULTS: The QFS-5 demonstrated excellent internal consistency ( α = 0.92); CFA supported the proposed domain structure with strong item loadings. Criterion validity was confirmed with correlation of -0.61 against the EQ-5D; higher symptom burden on related scales were associated with lower QFS-5 scores. Floor effects were minimal, while modest ceiling effects were observed in some domains. No significant floor or ceiling effects were found in participants living with frailty. CONCLUSION: The QFS-5 establishes validity, reliability, and effective use of an ability-based domain structure within a sample of mostly cognitively unimpaired, community-dwelling older adults. The QFS-5 aligns with EQ-5D measurements, demonstrating its potential utility in research and clinical practice to measure relevant patient reported QoL outcomes.

BACKGROUND:Current evidence favours a shift away from pharmacological to non-pharmacological approaches for the prevention and management of non-cognitive symptoms of dementia. With the limited effectiveness of pharmacological treatments and their risk of adverse effects, it is imperative to understand the effectiveness of non-pharmacological approaches to dementia care and lived experience. However, there has been little work to date to adapt non-pharmacological approaches in partnership with Indigenous people. The current model of dementia care is unsafe and inadequate and continued inaction will only lead to continued harm. The primary aim of this research was to develop an implementation-ready approach to Indigenous-centered dementia care that has been co-designed with partnering Indigenous communities. METHOD:This study prioritized ethical engagement with Indigenous community members. Participants were recruited through community social media and newsletters. Data were co-analysed using Indigenous approaches to thematic qualitative analysis to draft a preliminary structure for the Indigenous-centred dementia care approach. A modified Nominal Group Technique was held with a group of health care providers and decision makers that led to agreement on content and design, as well as the development of training materials for facilitators. RESULT:Four focus groups (five Indigenous participants with experience of dementia/group) were completed between October and December 2024 for participants to discuss potential content and modes of delivery of an Indigenous-centred dementia care intervention. Participants identified the need for: 1) culturally-specific brain health education that includes information on what dementia is; 2) Indigenous-specific risk identification and dementia prevention; 3) dementia-friendly Indigenous cultural and spiritual ceremonies; 4) programs for community and facility-living seniors that involved the traditions of local Indigenous Nations (e.g. jigging, beading, etc); and 5) in-depth training for staff to deliver the programming. CONCLUSION:This work will impact numerous populations that need culturally specific approaches to dementia care policy and planning by informing an ethical process to engaging with diverse populations. This work can help health and continuing care services provide community-specific approaches to non-pharmacological dementia care.

It is vital to incorporate thoughtful, rigorous and intentional approaches to the engagement of Indigenous people living with dementia and their families in research and policy. Engaging people living with dementia can be different when working in partnership with Indigenous communities. Authentic engagement requires engagement at multiple levels to preserve self-determination across the entire research process. The Indigenous research landscape in Canada is framed by both federal research requirements and community-driven Indigenous ethical principles. The federal research requirements, articulated in the Tri-Council Policy Statement: Ethical Conduct for Research Involving Humans, outline when and how community engagement should be undertaken with First Nations, Métis and Inuit individuals and communities. This includes when research will be done in partnership with Indigenous communities, or when research will be done with or analyses conducted with broader populations that may include and impact Indigenous people. These requirements provide a fail safe for academic Institutional Research Ethics Boards with which to hold researchers accountable to in a western model of research. It is perhaps more important, however, to consider community-led Indigenous ethical principles when engaging Indigenous people living with dementia and their families in research. Concepts such as respect, reciprocity, relevance and responsibility guide all our work but there are also distinctions-based approaches to ethical research relationships. Research with First Nations communities needs to consider the OCAP (Ownership, Control, Access, and Possession) research principles; research with Métis communities can refer to the Métis principles of research, and research with Inuit communities should implement Inuit research principles. In this session, we present examples of our commitment to upholding and asserting Indigenous self-determination while engaging Indigenous people with lived experience of dementia in research with the communities we each work with. Genuine relationships are the foundation and these relationships must be embedded and include people living with dementia in all stages of research, from initial research design, data collection, analysis and knowledge mobilization. We do this through sharing in ceremony, including traditional Knowledge Keepers and protocols and ensuring research and knowledge is co-produced and owned by the communities leading the research.

Subjective cognitive decline and mild behavioural impairment identify older persons more likely to have early Alzheimer’s disease. Vascular co-pathologies may also contribute to new onset and persistent cognitive and behavioural symptoms later in life. We investigated vascular risk factor associations with subjective cognitive decline and mild behavioural impairment. Cross-sectional data for 1285 (81.0% female) participants without mild cognitive impairment or dementia enrolled in the Canadian Platform for Research Online to Investigate Health, Quality of Life, Cognition, Behaviour, Function, and Caregiving in Aging were analyzed. Vascular risk factors included body mass index class, self-reported clinician diagnoses of hypertension, high cholesterol, diabetes, self-reported smoking, and the cumulative number of vascular risk factors. Outcomes were the Everyday Cognition scale and Mild Behavioural Impairment Checklist. Logistic and negative binomial regressions were used to model odds and severity of subjective cognitive decline and mild behavioural impairment as a function of individual or cumulative vascular risk factors. Having three or more vascular risk factors (odds ratio = 1.23, 95% confidence interval [1.04–1.47]), actively smoking (odds ratio = 1.54, 95% confidence interval [1.29–1.82]), being overweight (odds ratio = 1.46, 95% confidence interval [1.22–1.74]), and having diabetes (odds ratio = 1.29, 95% confidence interval [1.09–1.53]) were associated with higher odds of subjective cognitive decline. Having any number of vascular risk factors was dose-dependently associated with higher odds of mild behavioural impairment, as were all five vascular risk factors individually; active smokers (odds ratio = 2.67, 95% confidence interval [2.25–3.18]) and obese persons (odds ratio = 2.29, 95% confidence interval [1.91–2.75]) had over twice the odds of mild behavioural impairment. Vascular risk factors associations with subjective cognitive decline were stronger in participants with mild behavioural impairment. All vascular risk factors were linked to higher Everyday Cognition and Mild Behavioural Impairment Checklist total scores, indicating greater subjective cognitive decline and mild behavioural impairment symptom severity. Overweight body mass index, hypertension, and high cholesterol associations with subjective cognitive decline and mild behavioural impairment were stronger in middle-aged adults than older adults, but diabetes and active smoking had greater effects in older adults. Vascular risk factors are strongly related to experiences of cognitive and behavioural changes in later life, even in the absence of objective cognitive impairment. Furthermore, vascular associations with subjective cognitive decline symptoms may be more pronounced in persons with concomitant behavioural decline. Vascular pathologies may contribute to both cognitive and behavioural markers traditionally linked to Alzheimer’s disease in older persons, prior to mild cognitive impairment and dementia.

OBJECTIVES:Adverse childhood experiences (ACE) are associated with brain alterations and cognitive decline. In later life, cognitive impairment and mild behavioural impairment (MBI) are associated with greater dementia risk. We investigated whether more severe ACE are cross-sectionally associated with worse later-life cognitive and behavioural symptoms. STUDY DESIGN:Cross-sectional study. METHODS:Data are from the Canadian Platform for Research Online to Investigate Health, Quality of Life, Cognition, Behaviour, Function, and Caregiving in Aging (CAN-PROTECT). Measures included the Childhood Trauma Screener (CTS-5), neuropsychological testing, Everyday Cognition (ECog)-II scale, and MBI Checklist (MBI-C). Linear regressions modelled associations between ACE severity and neuropsychological test scores. Multivariable negative binomial regressions (zero-inflated, if appropriate) modelled associations between ACE severity and ECog-II and MBI-C scores. All models controlled for age, sex, education, and ethnocultural origin. Clinical diagnoses of depression and/or anxiety were explored as covariates or mediators. RESULTS:In adjusted analyses, higher ACE scores were associated with worse performance on Trail-Making B (standardized b = 0.10, q = 0.003), Switching Stroop (b = -0.08, q = 0.027), Paired Associates Learning (b = -0.08, q = 0.049), and Digit Span (b = -0.08, q = 0.029). Higher ACE scores were also associated with higher ECog-II (b = 1.08, q = 0.029) and MBI-C (b = 1.20, q < 0.001) scores; these associations were neither mediated by affective symptoms (ECog p = 0.16; MBI p = 0.13) nor moderated by sex (ECog p = 0.09; MBI p = 0.46). CONCLUSION:Older adults with a history of more severe ACE show greater cognitive and behavioural risk markers for dementia that cannot be explained by previous psychiatric history. Further research into ACE as an early modifiable risk factor for dementia is warranted.

Anti-Indigenous racism is prevalent in Canada, especially within healthcare systems. Consequences are catastrophic, including deaths of Indigenous patients. Systems change and critical education guided by the Indigenous Peoples and research into how racism operates within healthcare settings are needed. In Alberta, promising initiatives are under way, including a First Nations-led initiative identifying racism and colonialism as key health determinants, novel experiential education, transformative education for senior health leaders and reframing health system measures to reflect Indigenous Peoples' perspectives. The time is now for comprehensive action toward eliminating racism within healthcare systems and fostering Indigenous health systems safety. Indigenous lives depend on it.

BackgroundPerspectives from Indigenous peoples and their primary care providers about the quality and impacts of virtual primary care for Indigenous patients are currently limited. This study engaged Indigenous patients and their primary care providers, resulting in four domains being established for an Indigenous patient experience tool for use in virtual primary care. In this paper, we explore the development and finalisation of the Access, Relationships, Quality and Safety (ARQS) tool.MethodsWe re-engaged five Indigenous patient participants who had been involved in the semistructured interviews that established the ARQS tool domains. Through cognitive interviews, we tested the tool statements, leading to modifications. To finalise the tool statements, an Indigenous advisory group was consulted.ResultsThe ARQS tool statements were revised and finalised with twelve statements that reflect the experiences and perspectives of Indigenous patients.DiscussionThe ARQS tool statements assess the four domains that reflect high-quality virtual care for Indigenous patients. By centring Indigenous peoples and their lived experience with primary care at every stage in the tool’s development, it captures Indigenous-centred understandings of high-quality virtual primary care and has validity for use in virtual primary care settings.ConclusionThe ARQS tool offers a promising way for Indigenous patients to provide feedback and for clinics to measure the quality and safety of virtual primary care practice on the provider and/or clinic level. This is important, as such feedback may help to promote improvements in virtual primary care delivery for Indigenous patients and more widely, may help advance Indigenous health equity.

• Participants adapted well to virtual psychiatric care. • Concerns over virtual care stemmed from meeting a new care practitioner through virtual care. • Individuals with mood disorders were able to manage their conditions well in the first wave of COVID-19.

Background The COVID-19 pandemic has overwhelmed healthcare systems, leading many jurisdictions to reduce surgical services to create capacity (beds and staff) to care for the surge of patients with COVID-19. These decisions were made in haste, and little is known about the impact on patients whose surgery was delayed. This study explores the impact of delaying non-urgent surgeries on patients, from their perspective. Methods Using an interpretative description approach, we conducted interviews with adult patients and their caregivers who had their surgery delayed or cancelled during the COVID-19 pandemic in Alberta, Canada. Trained interviewers conducted semi-structured interviews. Interviews were iteratively analyzed by two independent reviewers using an inductive approach to thematic content analysis to understand key elements of the patient experience. Results We conducted 16 interviews with participants ranging from 27 to 75 years of age with a variety of surgical procedures delayed. We identified four interconnected themes: individual-level impacts (physical health, mental health, family and friends, work, quality of life), system-level factors (healthcare resources, communication, perceived accountability/responsibility), unique issues related to COVID-19, and uncertainty. Interpretation The patient-reported impact of having a surgery delayed during the COVID-19 pandemic was diffuse and consequential. While the decision to delay non-urgent surgeries was made to manage the strain on healthcare systems, our study illustrates the consequences of these decisions. We advocate for the development and adoption of strategies to mitigate the burden of distress that waiting for surgery during and after COVID-19 has on patients and their family/caregivers.