Incorporating Quality of Life Into Care for People Living With HIV: Developing a Core Outcome Set of Health and Social Well‐Being Patient‐Reported Outcome Measures for Clinical and Community Services

Background Achieving quality of life (QoL) outcomes for people living with HIV (PLHIV) is reliant on a mix of clinical and community service initiatives. A brief, agreed‐upon set of Patient‐Reported Outcome Measures (PROMs) may enhance shared care, strengthen service partnerships, and improve QoL monitoring and other relevant outcomes. Currently, there is no consensus on PROMs across HIV clinical, community and research settings. This study aimed to identify a small set of PROMs with Australian HIV peer, community, clinical, research and policy collaborators. Methods We conducted a review of PROM literature and Australian policy documents to assemble an initial list of social and health PROMs. A 3‐round online adapted Delphi consensus process asked participants in PLHIV peer, community, clinical, research and policy settings how important, appropriate and feasible each PROM would be in their work. A final consensus meeting confirmed the proposed structure of the PROM set. Results The review produced an initial list of 47 PROMs. The Delphi process resulted in 23 PROMs reaching consensus after Round 1 ( n = 40), which were then refined to 17 PROMs after Round 2 ( n = 34). In Round 3, participants preferred six PROMs to form a primary outcome set. Following the final consensus meeting, the PROM set included a building block structure, with a “Group A” set of six preferred PROMs (20 questions). A set of 10 “Group B” PROMs could be used optionally, depending on the specific context of community and clinical organisations, with one alternative PROM that applies across all outcomes. Conclusion This study identified 17 PROMs using an adapted Delphi consensus process that can be used to standardise measurement tools for QoL monitoring for PLHIV across community, clinical, and research settings in Australia. The future adoption of consensus‐based tools may enhance holistic, person‐centred care and improve the evaluation of shared care models.