Aboriginal people’s perceptions of patient-reported outcome measures in the assessment of diabetes health-related quality of life†
Alicia Burgess A B C * , Jessica Hawkins B C , Catherine Kostovski D , Michelle Kennedy A E , Stefania Penkala F G and Kerith Duncanson C H IA University of Newcastle, School of Medicine and Public Health, Callaghan, NSW, Australia.
B Illawarra Shoalhaven Local Health District, High Risk Foot Service, Wollongong, NSW, Australia.
C NSW Health Education and Training Institute, Rural Research Capacity Building Program, St Leonards, NSW, Australia.
D Illawarra Shoalhaven Local Health District, Aboriginal Chronic Care Unit, Warrawong, NSW, Australia.
E Hunter Medical Research Institute, Equity in Health and Wellbeing Research Program, Newcastle, NSW, Australia.
F Western Sydney University, School of Health Sciences, Sydney, NSW, Australia.
G Western Sydney University, Translational Health Research Institute, Sydney, NSW, Australia.
H University of Newcastle, Centre of Research Excellence in Digestive Health, Callaghan, NSW, Australia.
I Hunter Medical Research Institute, Immune Health Program, Newcastle, NSW, Australia.
Australian Journal of Primary Health 29(2) 165-174 https://doi.org/10.1071/PY22150
Submitted: 15 July 2022 Accepted: 19 October 2022 Published: 15 November 2022
© 2023 The Author(s) (or their employer(s)). Published by CSIRO Publishing on behalf of La Trobe University. This is an open access article distributed under the Creative Commons Attribution-NonCommercial-NoDerivatives 4.0 International License (CC BY-NC-ND)
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 management-related 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 diabetes-related 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.
Keywords: Aboriginal, delivery of health care: integrated, diabetes, disease management, healthcare disparities, indigenous health services, patient-centred care, Patient Reported Measures.
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