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

Abstract

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.

Connecting the Dots of Care: A pilot study linking Aboriginal and/or Torres Strait Islander peoples with diabetes care in hospital, using hospital pharmacists

“… 26 Earlier detection, along with increased knowledge and education and effective management, is needed to reduce undiagnosed diabetes, prevent complications and morbidity, and improve quality of life in priority populations including Aboriginal and/or Torres Strait Islander peoples. 27 , 28 , 29 Greater investment is needed to prevent and detect diabetes earlier. 30 This is especially relevant as diabetes like other cardiometabolic diseases occur from a younger age 17 and risk increases with age in these groups.…”

Equity in primary health care provision: more than 50 years of the inverse care law

“…Tane et al (2023) outline a culturally appropriate smoking cessation program for Aboriginal and Torres Strait Islander women. Burgess et al (2023) explored the appropriateness of Patient-Reported Outcome Measures for diabetes with Aboriginal people and found them wanting.…”