Aboriginal people’s perceptions of patient-reported outcome measures in the assessment of diabetes health-related quality of life.
Jessica Hawkins1,3, Alicia Burgess1,2,3, Catherine Kostovski 4, Michelle Kennedy2,5, Stefania Penkala 6,7, Kerith Duncanson3,8,9 1Illawarra Shoalhaven Local Health District, High Risk Foot Service, Wollongong, NSW , Australia 2University of Newcastle, School of Medicine and Public Health, Callaghan, NSW , Australia 3NSW Health Education and Training Institute, Rural Research Capacity Building Program, St Leonards, NSW, Australia 4Agency of Clinical Innovation, Chronic Care for Aboriginal People, St Leonards, NSW, Australia5Hunter Medical Research Institute, Equity in Health and Wellbeing Research Program, Newcastle, NSW, Australia6Western Sydney University, School of Health Science, Sydney, NSW , Australia7Western Sydney University, Translational Health Research Institute, Sydney, NSW , Australia8University of Newcastle, Centre of Research Excellence in Digestive Health, Callaghan, NSW , Australia9Hunter Medical Research Institute, Immune Health Program, Newcastle, NSW , Australia
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.
Methods. Twenty-nine Aboriginal people living with diabetes in the Shoalhaven discussed two PROMs in a focus group or 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.
Biography
Alicia Burgess is a Podiatrist and Jessica Hawkins is a dietitian, CNS and diabetes educator, they are both non-Aboriginal women born in Dharawal Country.
Alicia has worked with the study communities for the past 10 years, providing education, foot assessments and organising Podiatry referrals.
Jessica has been involved with the Aboriginal community through dietetic and diabetes education with the Aunty Jeans program and study communities with her associate researchers.