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

Abstract

Background: Patient-reported outcome measures (PROMs) provide patients with a platform to report on healthcare services and interventions, including the management of diabetes and other chronic diseases. Given the major disparity in incidence and prevalence of diabetes between Aboriginal and non-Aboriginal people, it is crucial that PROMs meet the cultural, spiritual and medical needs of this high-risk population. Anecdotal evidence indicates that PROMs do not capture accurate information about the healthcare of Aboriginal people with Type 2 diabetes. Therefore, the aim of this study is to explore the perceptions of Aboriginal people in regional New South Wales (NSW), Australia, about the cultural appropriateness of a set of PROMs relating to diabetes management. Methods/design: Up to 50 Aboriginal people aged 18 years or older with type 1 or type 2 diabetes living in the Shoalhaven region in NSW, will be recruited. Eligible, consenting participants will attend a focus group or individual interview where they will review the PROM tools (PROMIS 29 and PAID scale) currently used for diabetes management. Semi-structured questions will be used to gather information about PROMs and discussions will be recorded for analysis. Research team members will yarn about the data with Aboriginal co-researchers and community stakeholders to apply an Indigenous lens to coding and thematic analysis. Conclusion: This study will explore the cultural appropriateness of government-initiated evaluation of health outcomes, and make recommendations about how these evaluations can be better suited to Aboriginal people. The lessons from this study will be of interest to those conducting research or quality assessment activities related to PROMs, and those involved with Aboriginal-focused research and project implementation.

Keywords

• patient reported outcome measures
• aboriginal
• diabetes