Image by Graham Brown
Developing an HIV consensus tool of health and social PROMs for clinical and community services
In 2023, we completed a project to create a standard set of patient-reported outcome measures (PROMs) for people living with HIV (PLHIV). The aim was to make these PROMs practical for everyday use in both clinical and community settings.
Why we developed this set of PROMs
Addressing the need for standardised tools in HIV care
PROMs help capture how patients feel about their health and quality of life. They provide healthcare providers with valuable insights into patient experiences and needs. During the development and trial phases of PozQoL, feedback from both the community and clinical sectors highlighted the need for an agreed-upon, standardised set of PROMs. By addressing this need, we aimed to improve the consistency of PROM use, to enhance care, collect consistent data, and provide timely support for PLHIV.
How we chose the PROMs
A collaborative process with experts from diverse sectors
We reviewed existing literature and consulted over 40 experts – including PLHIV peers – working with PLHIV in clinical, community, government, and research settings. This collaboration helped us narrow down a list of 147 PROMs to 18.
The final list of PROMs covers seven domains of wellbeing identified by the experts as important:
- Quality of life
- Physical wellbeing
- Psychological wellbeing
- Treatment-related factors
- Social wellbeing
- Stigma and discrimination
- Welfare, lifestyle, and safety
The list includes two groups of PROMs:
- Group A: Core PROMs, recommended for consistent use across services
- Group B: Optional PROMs, which can be added depending on specific needs
Services can choose to use the PROMs together for a complete picture or select individual ones based on their requirements.
PozQoL: A core measure
PozQoL stood out as a highly valued tool for measuring quality of life in PLHIV
PozQoL received high ratings from experts and is included in the Group A minimum PROM set. This set was prioritised as the most important and useful tools for outcome measures across different settings. PozQoL’s inclusion in Group A underscores its significance in the broader context of health assessments for PLHIV.
Key features that highlight PozQoL’s effectiveness and versatility include:
- Tailored to PLHIV: PozQoL is specifically designed to assess the quality of life for PLHIV. Developed with Greater Involvement of People with HIV/AIDS (GIPA) principles, PLHIV had a direct role in shaping PozQoL. This peer-led approach enhances its relevance and increases its acceptance among the people it serves.
- Widely adopted: PozQoL has been successfully integrated into community services, clinical settings, and research. Its broad adoption reflects its practicality and effectiveness in a variety of real-world applications.
- Holistic wellbeing assessment: Within the minimum recommended set of PROMs, PozQoL was rated as a sufficient measure not only for assessing quality of life but also for physical, psychological, and social wellbeing. This highlights its comprehensive scope and importance for PLHIV.
What healthcare providers can expect
Improving service delivery and patient engagement with PROMs
For those working with PLHIV, these PROMs offer a way to consistently measure outcomes and understand the needs of their patients and clients.
We recommend services start with using the Group A PROMs. As needed, add PROMs from Group B.
By using a consistent set of tools, we can improve service delivery and better meet the needs of PLHIV, ensuring they are actively involved in their own healthcare decisions and that they receive the support they need, when they need it.
Learn more
Check out a summary of our work or read the full report
This summary document gives a quick, practical look at the key findings and how the PROMs can be applied in everyday settings. If you want a deeper dive, our full report offers more detailed information about the method and analysis.
Meet the author and organisation
Professor Graham Brown
Graham Brown was the research lead on this project. He has over 25 years in HIV community-based organisations and health promotion research. Graham is passionate about research that enables communities to mobilise and lead social change.
Centre for Social Impact, University of NSW
This research was conducted at the Centre for Social Impact (CSI) at the University of New South Wales (UNSW), a leading organisation dedicated to improving the lives of individuals and communities through evidence-based research, education, and advocacy.
Co-investigators Aleksandra Olekalns and Catherine Mai were instrumental in achieving these outcomes, providing critical insights and leadership throughout the project.
This project was made possible through funding from Gilead Sciences.
This story was originally published under the title ‘Developing an HIV consensus tool of health and social PROMs for clinical and community services’. It has since been updated to refine its content and presentation.
