Assessing cultural appropriateness of patient-reported outcome measures for Aboriginal people with diabetes: study protocol

Burgess, Alicia; Hawkins, Jessica; Kostovski, Catherine; Duncanson, Kerith

doi:10.17061/phrp31122105

Cited by 4 publications

(4 citation statements)

References 12 publications

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“…Such approaches require the development of population-specific instruments of patient experience and patient-reported outcomes, such as those that have been (or are being) developed in cancer 46,47 and diabetes. 48 Revision of the Aboriginal Health Key Performance Indicators might increase the amount of health outcomes data available and allow more sophisticated quantification of wellbeing and/or financial benefits (both positive and/or negative) for diseases with high burden amongst Aboriginal and Torres Strait Islander people. Notably, many studies included in the review acknowledged Aboriginal and Torres Strait Islander concepts of holistic health and wellbeing and the intangible benefits of health programs that could not be captured as part of formal economic evaluations.…”

Section: Discussionmentioning

confidence: 99%

Scope and quality of economic evaluations of Aboriginal and Torres Strait Islander health programs: a systematic review

Doran

Bryant

Langham

et al. 2022

Australian and New Zealand Journal of Public Health

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Objectives: Identify the number, type, scope and quality of economic evaluations of Aboriginal and Torres Strait Islander health programs. Methods:A systematic review of peer-reviewed and grey literature was conducted for articles published from 2010 to 2020 that reported a full economic evaluation of Aboriginal and Torres Strait Islander health programs. Data extraction included: type of economic evaluation, comparators, data sources and concerns, and outcome measures. Methodological quality was assessed using the Drummond checklist.Results: Thirteen publications met inclusion criteria: two cost-consequence analyses, two costeffectiveness analyses, five cost-utility analyses, and four cost-benefit/return on investment analyses. Most studies (n=10) adopted a health system perspective and used a range of key data sources for economic analyses. Ten studies identified data access limitations that restricted analyses and two studies identified data quality concerns. Twelve studies were of good methodological quality and one was of average quality.Conclusions: Despite significant investment in strategies to close the gap in health outcomes for Aboriginal and Torres Strait Islander people, there is limited evidence about what constitutes a cost-effective investment in Aboriginal and Torres Strait Islander healthcare.Implications for public health: More economic evaluation is required to justify the significant investment in health programs for Aboriginal and Torres Strait Islander people.

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Section: Discussionmentioning

confidence: 99%

Scope and quality of economic evaluations of Aboriginal and Torres Strait Islander health programs: a systematic review

Doran

Bryant

Langham

et al. 2022

Australian and New Zealand Journal of Public Health

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“…There are 20 questions rated on a five-point Likert scale from 'not a problem' to 'a serious problem' and designed to measure the patient's perspective of diabetes-related stress (Welch et al 1997). A detailed description of the PROMIS-29 and PAID Scale and their use as PROMs within the NSW public health sector, and the consultative processes used to develop the protocol for this study, have been described previously (Burgess et al 2022).…”

Section: Methodsmentioning

confidence: 99%

“…Ethics were obtained as follows: the study was designed in collaboration with five Shoalhaven Aboriginal communities and this process was previously reported (Burgess et al 2022). This study was overseen by a Community consultative group consisting of Aboriginal Elders, healthcare professionals and community members to ensure all voices were included in the project design and delivery.…”

Section: Ethics and Reportingmentioning

confidence: 99%

Aboriginal people’s perceptions of patient-reported outcome measures in the assessment of diabetes health-related quality of life†

Burgess

Hawkins

Kostovski

et al. 2022

Aust. J. Prim. Health

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Background. Patient-reported outcome measures (PROMs) provide clinicians and consumers a platform to inform and improve healthcare planning and management. Aboriginal people experience disproportionately high rates of chronic diseases, including type 2 diabetes. Treatment and management require holistic approaches that draw on culturally relevant resources and assessment tools. This study explored perceptions of Aboriginal people about two diabetes managementrelated PROMs (PROMIS-29, PAID Scale). Methods. Twenty-nine Aboriginal people living with diabetes in the Shoalhaven discussed two PROMs in one of four focus groups or at an individual interview. Preliminary data coding was conducted by clinician researchers, with thematic analysis overseen by Aboriginal co-researchers. Subsequent individual interviews with participants were undertaken to seek further feedback and articulate what is needed to improve methods of evaluating Aboriginal people's self-reported quality of life and diabetes management. Results. The PROMs did not capture information or knowledge that Aboriginal people considered relevant to their diabetesrelated health care. Participants' recommendations included adapting survey materials to be more culturally sensitive; for example, by improving the alignment of measures with common day-to-day activities. This study also describes a genuine collaborative, Aboriginal community-guided approach to evaluate 'fit-for-purpose' diabetes management tools. Conclusions. Appropriate evaluation methods are paramount to address the disproportionate burden of diabetes experienced by Aboriginal peoples and overcome inverse diabetes care. Our learnings will contribute to development of tools, resources or methods that capture culturally tailored outcome measures. Study findings are relevant to clinicians and researchers using and/or developing Patient Reported Measures, particularly in relation to the practicality of tools for First Nations peoples.

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“…The reviewed articles are summarized in Schematic 1. Most of the studies were conducted in the Australian outback with five aboriginal tribes (12,(20)(21)(22)(23), one Victorian native (24), and one Torres Strait Islander native (23); in Canada with four Ontario natives (25)(26)(27)(28), three Alberta natives (28,29), one Vancouver native (28), and one Atikamekw native (30); in Guatemala with one Solol native (31) and one Mayan Kaqchikel native (32); in Queensland with one Cunnamulla native (33); and one in the United States with Alaska and Indians natives (34). The majority of research sites were the community (73.68%, n = 14), clinics (15.78%, n = 3), and primary health centers (10.52%, n = 2), as presented in Table 1.…”

Section: General Characteristicsmentioning

confidence: 99%

Challenges and Opportunities for Diabetes Care in Indigenous People: A Scoping Review

Haskas,

Suarnianti,

Restika

2023

J Educ Community Health

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Background: Diabetes mellitus in indigenous people has increased globally. This disease develops very quickly and has a higher prevalence among indigenous people. When caring for diabetes, indigenous people face many obstacles that worsen their condition. However, only a few studies have comprehensively reviewed such a condition and investigated various tribal backgrounds of indigenous people. This study aimed to identify diverse challenges and opportunities in caring for diabetes in indigenous people. Methods: This scoping review was conducted from March to August 2022 by searching for manuscripts on PubMed, Science Direct, Cochrane Library, Wiley, Directory of Open Access Journals, ProQuest, GARUDA, and Grey Literature databases to identify challenges and opportunities in caring for diabetes mellitus in indigenous people. Three reviewers independently screened the results, and the extracted data were then mapped, categorized, and summarized. Results: This study identified eight categories of challenges and three opportunities. Trust, language, health literacy, access to health services, and costs are challenges for indigenous people in caring for diabetes. In addition, three aspects were considered opportunities to care for diabetes in indigenous people: support from health workers who are from the indigenous communities to solve trust issues, intervention modification based on culture, language, and technology, and support from health authorities. Conclusion: Challenges to the indigenous people’s religious and cultural factors should be addressed seriously to care for diabetes. However, this action requires different approaches and cannot be generalized to all indigenous communities.

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Assessing cultural appropriateness of patient-reported outcome measures for Aboriginal people with diabetes: study protocol

Cited by 4 publications

References 12 publications

Scope and quality of economic evaluations of Aboriginal and Torres Strait Islander health programs: a systematic review

Scope and quality of economic evaluations of Aboriginal and Torres Strait Islander health programs: a systematic review

Aboriginal people’s perceptions of patient-reported outcome measures in the assessment of diabetes health-related quality of life†

Challenges and Opportunities for Diabetes Care in Indigenous People: A Scoping Review

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