Developing an HIV consensus tool of health and social PROMs for clinical and community services

Image by Graham Brown

Patient-reported outcome measures (PROMs) are valuable tools that provide insights into a patient’s perception and experience regarding their health, quality of life, and functional status. Integrating PROMs into healthcare practices can enhance person-centred care and lead to improved and sustained health outcomes.

The PozQoL scale is an example of a PROM. PozQoL has found application in community and clinical services, as well as social research studies. Throughout the development and trial phases of PozQoL, input from the community and clinical sectors highlighted the importance of establishing a standardised set of PROMs that had support across these sectors and from researchers. Such an initiative could promote consistent PROMs usage, empower PLHIV in their healthcare decisions, and facilitate timely support for this population.

The Centre for Social Impact at the University of New South Wales undertook a project aimed at identifying a minimum recommended set of health and social PROMs, including PozQoL, for PLHIV. The objective was to integrate these PROMs into the day-to-day practices of clinical and community services. To accomplish this, the project employed an adapted Delphi study involving participants from community, clinical, government, and research settings. The study focused on assessing the importance, appropriateness, and usefulness of different PROMs for inclusion in the recommended set. The PROMs considered encompass seven domains of health and social outcomes:

  • Quality of life
  • Physical wellbeing
  • Psychological wellbeing
  • Treatment-related factors
  • Social wellbeing
  • Stigma and discrimination
  • Welfare, lifestyle, and safety

For more information, you can read the summary of the recommended PROMS or the full report.

This study was supported by an independent grant from Gilead Sciences.

About Graham and his work

Graham Brown was the research lead on this project. He has been working in, and researching, community-led health promotion, social change, and evaluation for more than 25 years, and is passionate about research that enables communities to mobilise and lead social change.