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Community Engagement and Psychometric Methods in Aboriginal and Torres Strait Islander Patient-Reported Outcome Measures and Surveys-A Scoping Review and Critical Analysis.

ABSTRACT: (1) Background: In healthcare settings, patient-reported outcome measures (PROMs) and surveys are accepted, patient-centered measures that provide qualitative information on dimensions of health and wellbeing. The level of psychometric assessment and engagement with end users for their design can vary significantly. This scoping review describes the psychometric and community engagement processes for PROMs and surveys developed for Aboriginal and Torres Strait Islander communities. (2) Methods: The PRISMA ScR guidelines for scoping reviews were followed, aimed at those PROMs and surveys that underwent psychometric assessment. The Aboriginal and Torres Strait Islander Quality Appraisal Tool and a narrative synthesis approach were used. (3) Results: Of 1080 articles, 14 were eligible for review. Most articles focused on a validity assessment of PROMs and surveys, with reliability being less common. Face validity with Aboriginal and Torres Strait Islander communities was reported in most studies, with construct validity through exploratory factor analyses. Methodological design risks were identified in the majority of studies, notably the absence of explicit Indigenous knowledges. Variability existed in the development of PROMs and surveys for Aboriginal and Torres Strait Islander communities. (4) Conclusions: Improvement in inclusion of Indigenous knowledges and research approaches is needed to ensure relevance and appropriate PROM structures. We provide suggestions for research teams to assist in future design.

SUBMITTER: Ryder C

PROVIDER: S-EPMC9407920 | biostudies-literature | 2022 Aug

REPOSITORIES: biostudies-literature

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Community Engagement and Psychometric Methods in Aboriginal and Torres Strait Islander Patient-Reported Outcome Measures and Surveys-A Scoping Review and Critical Analysis.

Ryder Courtney C Stephens Jacqueline H JH Ullah Shahid S Coombes Julieann J Cominos Nayia N Sharpe Patrick P D'Angelo Shane S Cameron Darryl D Hayes Colleen C Bennett-Brook Keziah K Mackean Tamara T

International journal of environmental research and public health 20220819 16

(1) Background: In healthcare settings, patient-reported outcome measures (PROMs) and surveys are accepted, patient-centered measures that provide qualitative information on dimensions of health and wellbeing. The level of psychometric assessment and engagement with end users for their design can vary significantly. This scoping review describes the psychometric and community engagement processes for PROMs and surveys developed for Aboriginal and Torres Strait Islander communities. (2) Methods: ...[more]

PMID: 36011989

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Project description:BackgroundIt is well established that racism is a fundamental contributor to poor health and inequities. There is consistent evidence of high exposure to discrimination among Aboriginal and Torres Strait Islander (Indigenous Australian) peoples, but impacts have not been fully quantified, in part due to limited measurement tools. We aim to validate instruments developed to measure interpersonal discrimination.MethodsInstruments were discussed at five focus groups and with experts, and field tested in developing Mayi Kuwayu: The National Study of Aboriginal and Torres Strait Islander Wellbeing. Data from 7501 baseline survey participants were analysed. Acceptability was assessed according to extent of missingness, construct validity using exploratory and confirmatory factor analysis, and reliability using Cronbach's alpha. Associations between each instrument and outcomes conceptually understood to be closely (community-level racism) or less closely (family wellbeing) related were quantified to test convergent and discriminant validity.ResultsAn 8-item instrument captures experiences of discrimination in everyday life and a 4-item instrument experiences in healthcare, each followed by a global attribution item. Item missingness was 2.2-3.7%. Half (55.4%) of participants reported experiencing any everyday discrimination, with 65.7% attributing the discrimination to Indigeneity; healthcare discrimination figures were 34.1% and 51.1%. Items were consistent with two distinct instruments, differentiating respondents with varying experiences of discrimination. Scales demonstrated very good reliability and convergent and divergent validity.ConclusionThese brief instruments demonstrate face validity and robust psychometric properties in measuring Aboriginal and Torres Strait Islander adults' experiences of interpersonal discrimination in everyday life and in healthcare. They can be used to quantify population-level experiences of discrimination, and associated wellbeing consequences, and monitor change.

Project description:BackgroundFor Aboriginal and Torres Strait Islander peoples, culture is foundational to health and wellbeing. However, its inherent conceptual complexity and diversity across and within different Aboriginal and Torres Strait Islander cultural groups means that it has rarely been explored in depth by epidemiological research. As a result, there are very few measures which adequately represent the heterogeneity and importance of Aboriginal and Torres Strait Islander cultures for health and wellbeing. Tools grounded in the social determinants of health are mostly based on European academic opinion about what constitutes culture and wellbeing, and the views of Indigenous peoples are rarely included. Mayi Kuwayu, the National Study of Aboriginal and Torres Strait Islander Wellbeing, developed a new survey tool based on health and wellbeing as perceived by Aboriginal and Torres Strait Islander people. This paper describes several of the key processes used to identify cultural domains and develop questionnaire items for the survey tool, reflecting the importance of culture to Aboriginal and Torres Strait Islander peoples.MethodsFocus groups were conducted at community organisations and conferences with Aboriginal and Torres Strait Islander people. These sessions were aimed at identifying key cultural domains to be addressed by the Mayi Kuwayu questionnaire and to field test drafts of the questionnaire, which were then modified according to focus group feedback and expert input.ResultsExtensive community consultations allowed us to identify key cultural domains, generate questionnaire items, and test initial content validity. The six overarching cultural domains identified during the development of the Mayi Kuwayu questionnaire were: Connection to Country; Beliefs and knowledge; Language; Family, kinship, and community; Cultural expression and continuity; and Self-determination and leadership.ConclusionsThe processes used by Mayi Kuwayu have generated meaningful cultural items for use in Aboriginal and Torres Strait Islander health and wellbeing research. Further assessment of these processes, including a comparison with best practice guidelines and psychometric testing of the items and scales developed, will be conducted in a future program of work.

Project description:IntroductionKnowledge translation (KT) involves bridging the gaps between research knowledge and research application or practice, by sharing this knowledge with knowledge-users. KT is increasingly being used in research with Indigenous peoples globally to address the top-down and inappropriate research approaches commonly used in Indigenous research. Employing KT in Indigenous research in Australia is an emergent field, despite Aboriginal and Torres Strait Islander peoples having conducted KT for generations.There is limited evidence which demonstrates how KT is applied in the Aboriginal/Torres Strait Islander context. Results will benefit researchers by demonstrating ways of appropriately translating research findings to knowledge-users, including Aboriginal and Torres Strait Islander communities, researchers and policy makers. The scoping review will also inform a KT definition, method and practices used in a large-scale, longitudinal cohort study of Aboriginal and Torres Strait Islander adults: the Mayi Kuwayu Study.Methods and analysisUnder guidance of an Aboriginal and Torres Strait Islander governance committee, we will conduct a scoping review on KT in Aboriginal/Torres Strait Islander research. We will follow the scoping review method outlined by the Joanna Briggs Institute. We will search the ANU SuperSearch, and grey and hard to find literature in June 2022. Abstracts and full-text articles will be screened by two independent reviewers. We will include studies that relate to KT in Aboriginal/Torres Strait Islander research, regardless of the research topic. Results will be used to inform the KT definition, method and practices that can be used in Aboriginal/Torres Strait Islander research contexts in Australia.Ethics and disseminationThe Mayi Kuwayu Study has ethics approvals from the Australian Institute of Aboriginal and Torres Strait Islander Studies, 12 Aboriginal/Torres Strait Islander organisations, and the Australian National University Human Research Ethics Committee. Results will be disseminated through peer-review publication and community workshops. Protocol registration is available online (10.17605/OSF.IO/JMFQ3).

Project description:BackgroundUnderstanding normative retinal thickness characteristics is critical for diagnosis and monitoring of pathology, particularly in those predisposed to retinal disease. The macular retinal layer thickness of Australian Aboriginal and/or Torres Strait Islander children was examined using spectral-domain optical coherence tomography.MethodsHigh-resolution macular optical coherence tomography imaging was performed on 100 Aboriginal and/or Torres Strait Islander children and 150 non-Indigenous visually healthy children aged 4-18 years. The imaging protocol included a 6-line radial scan centred on the fovea. Images were segmented using semi-automated software to derive thickness of the total retina, inner and outer retina, and individual retinal layers across the macular region. Repeated measures ANOVAs examined variations in thickness associated with retinal region, age, gender and Indigenous status.ResultsRetinal thickness showed significant topographical variations (p < 0.01), being thinnest in the foveal zone, and thickest in the parafovea. The retina of Aboriginal and/or Torres Strait Islander children was significantly thinner than non-Indigenous children in the foveal (p < 0.001), parafoveal (p = 0.002), and perifoveal zones (p = 0.01), with the greatest difference in the foveal zone (mean difference: 14.2 μm). Inner retinal thickness was also thinner in Aboriginal and/or Torres Strait Islander children compared to non-Indigenous children in the parafoveal zone (p < 0.001), and outer retinal thickness was thinner in the foveal (p < 0.001) and perifoveal zone (p < 0.001). Retinal thickness was also significantly greater in males than females (p < 0.001) and showed a statistically significant positive association with age (p = 0.01).ConclusionThere are significant differences in macular retinal thickness between Aboriginal and/or Torres Strait Islander children and non-Indigenous children, which has implications for interpreting optical coherence tomography data and may relate to risk of macula disease in this population.

Project description:BackgroundLiver disease and hepatocellular carcinoma (HCC) are important contributors to the mortality gap between Indigenous and non-Indigenous Australians. However, there is a lack of population based high quality data assessing the differences in HCC epidemiology and outcomes according to Indigenous status. The aim of this study was therefore to perform a large epidemiological study of HCC investigating differences between Indigenous and non-Indigenous Australians with HCC.MethodsStudy design was a retrospective cohort study. Data linkage methodology was used to link data from cancer registries with hospital separation summaries across three Australian jurisdictions during 2000-2017. Cumulative survival (Kaplan-Meier) and the differences in survival (Multivariable Cox-regression) by Indigenous status were assessed.FindingsA total of 229 Indigenous and 3587 non-Indigenous HCC cases were included in the analyses. Significant epidemiological differences identified for Indigenous HCC cases included younger age at onset, higher proportion of females, higher rurality, lower socioeconomic status, and higher comorbidity burden (all p < 0.001). The distribution of cofactors was also significantly different for Indigenous Australians including higher prevalence of alcohol misuse, hepatitis B, and diabetes and more frequent presence of multiple HCC cofactors (all p < 0.001). Indigenous Australians received curative HCC therapies less frequently (6.6% vs. 14.5%, p < 0.001) and had poorer 5-year survival (10.0% vs. 17.3%, p < 0.001; unadjusted hazard ratio (HR) =1.42 96%CI 1.21-1.65) compared to non-Indigenous Australians. The strength of the association between indigenous status and survival was weaker and statistically non-significant after adjusting for rurality, comorbidity burden and lack of curative therapy (adjusted-HR=1.20 95%CI 0.97-1.47).InterpretationSuch data provide a call to action to help design and implement health literacy, liver management and HCC surveillance programs for Indigenous people to help close the liver cancer mortality gap.

Project description:BackgroundLeave events are a public health concern resulting in poorer health outcomes. In Australia, leave events disproportionally impact Aboriginal and Torres Strait Islander people. A systematic review was conducted to explore the causes of leave events among Aboriginal and Torres Strait Islander people and strategies to reduce them.MethodsA systematic review was conducted using Medline, Web of Science, Embase and Informit, a database with a strong focus on relevant Australian content. Additionally, we examined the references of the records included, and performed a manual search using Google, Google scholar and the Australia's National Institute for Aboriginal and Torres Strait Islander Health Research. Two independent reviewers screened the records. One author extracted the data and a second author reviewed it. To appraise the quality of the studies the Mixed Methods Appraisal Tool was used as well as the Aboriginal and Torres Strait Islander Quality Appraisal Tool. A narrative synthesis was used to report quantitative findings and an inductive thematic analysis for qualitative studies and reports.ResultsWe located 421 records. Ten records met eligibility criteria and were included in the systematic review. From those, four were quantitative studies, three were qualitative studies and three reports. Five records studied data from the Northern Territory, two from Western Australia, two from New South Whales and one from Queensland. The quantitative studies focused on the characteristics of the patients and found associations between leave events and male gender, age younger than 45 years and town camp residency. Qualitative findings yielded more in depth causes of leave events evidencing that they are associated with health care quality gaps. There were multiple strategies suggested to reduce leave events through adapting health care service delivery. Aboriginal and Torres Strait Islander representation is needed in a variety of roles within health care provision and during decision-making.ConclusionThis systematic review found that multiple gaps within Australian health care delivery are associated with leave events among Aboriginal and Torres Strait Islander people. The findings suggest that reducing leave events requires better representation of Aboriginal and Torres Strait Islander people within the health workforce. In addition, partnership with Aboriginal and Torres Strait Islander people is needed during the decision-making process in providing health services that meet Aboriginal and Torres Strait Islander cultural needs.

Dataset Information

Community Engagement and Psychometric Methods in Aboriginal and Torres Strait Islander Patient-Reported Outcome Measures and Surveys-A Scoping Review and Critical Analysis.

Publications

Community Engagement and Psychometric Methods in Aboriginal and Torres Strait Islander Patient-Reported Outcome Measures and Surveys-A Scoping Review and Critical Analysis.

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