Quality of life Research

Quality of life research

NAPWHA aims to ensure that there is a good understanding of what quality of life means for people living with HIV. In this section you will find various reports and research papers that give us information about quality of life for people living with HIV in Australia.

HIV FUTURES Study

The HIV Futures 10 survey about the health and wellbeing of people living with HIV in Australia, has been conducted at the Australian Research Centre in Sex, Health and Society (ARCSHS) at La Trobe University since 1997. It is Australia’s largest and longest-running survey, of which NAPWHA is one of the project collaborators.

The study team is keen to hear from all people (cis and trans) living with HIV, including women, heterosexual men, and gay and bisexual men.

HIV Futures 10 is particularly keen to ensure a diversity of experiences is represented, including people from culturally and linguistically diverse communities.

HIV Futures is an anonymous survey. It asks people about a range of issues including their health, treatments, work and financial situation, and is key to national change, including improving services for PLHIV and strategies to reduce stigma.

If you are a person living with HIV in Australia and aged over 18 years, the HIV Futures team would love to hear from you. The survey closed in March 2022.

HIV Futures 9 logo

Read about past HIV FUTURES Surveys

HIV Futures 9, published in September 2019, focused on quality of life among people living with HIV (PLHIV). Data was collected from December 2018 until May 2019. Participants completed a questionnaire using a self-complete online or hardcopy form. The survey instrument comprised 148 questions related to quality of life, financial security, health, well-being, treatment, support, sex, relationships, HIV-related stigma, and ageing.

PozQoL Scale—measuring changes in quality of life among people living with HIV

Video:  Associate Professor Graham Brown — one of the PozQoL Project’s lead investigators — welcomes you to the PozQoL Website (Read the transcript here)

We encourage anyone providing clinicalpeer-led, or community-based services for PLHIV to take advantage of PozQoL in their day-to-day practice.

The PozQoL Scale is an empirically validated quality of life scale for people with HIV. The Scale was developed between 2016 and 2019 through a partnership project of the Australian Research Centre in Sex, Health and Society (ARCSHS); ViiV Healthcare; NAPWHA; Living Positive Victoria; Positive Life NSW; and Queensland Positive People.

Video: Dr John Rule, Senior Research Manager at the National Association of People with HIV Australia, talks about quality of life for people living with HIV, and the importance of having a PozQoL scale instrument that can capture and measure the diverse experiences of people living with HIV. The instrument can be used by PLHIV community organisations and health services. (Read the transcript here)

ViiV healthcare: Positive Perspectives 2 Survey

On 26 March 2021, NAPWHA hosted a community interactive webinar discussing data from the ViiV Positive Perspectives 2 (PP2) study created to generate insights into the unmet needs of people living with HIV (PLHIV). It is one of the largest global, HIV patient-reported outcomes studies involving 2,389 PLHIV across 25 countries.

Video

  • 00:00 Daniel Reeders, NAPWHA Host — Welcome
  • 03:16Dr Ben Young, ViiV Healthcare Head of Global Medical Directors — What affects quality of life and favourable health outcomes?
  • 31:35 Brent Allan, ViiV Positive Perspectives Wave 1 and Wave 2, Country Advisor for Australia — What does the Positive Perspective 2 data mean for PLHIV in Australia? (Discussion)
  • 51:28 Q&A with the panel

Incorporating quality of life into PLHIV care: developing a consensus tool of health

The Centre for Social Impact (at UNSW) is conducting a project to enhance clinical and community practice by combining a set of recommended health and social Patient Reported Outcome Measures (PROMs; including quality of life) for people living with HIV (PLHIV) that can be incorporated usefully into day-to-day practice of clinical and community services.

This resulting outcome set is likely to enhance care plans and care engagement across services and provide an exciting and timely opportunity to align the monitoring of quality of life and other key PROMs across clinical, community and national outcomes monitoring.

We are conducting an adapted Delphi consensus process, which involves up to three feedback surveys to narrow down the list of outcome measures and an optional final consensus meeting (in an online format), to select the minimum set of most practical PROM candidates to include.

The research study is looking recruit professionals currently working within a clinical, community, research or government setting related to care for people with HIV or outcomes monitoring. Community professionals includes trained PLHIV peer support workers.

 On completing the final survey, you will be invited to select an Australian HIV organisation to be provided a $25 donation as thanks for your time.

HIV seroconversion over time: 30 years exploring accounts of HIV infection and diagnosis

Kirby Institute and NAPWHA held a World AIDS Day 2022 event reflecting on how far we’ve come 30 years after the first seroconversion study in Australia. 

In 1992, the first in-depth study was set up to explore the ‘event’ that people attributed to their HIV seroconversion. Unique in the world, this study investigated the ways in which people understand and negotiate HIV risk.

Over time, studies of HIV seroconversion have identified many important issues, such as the emergence of strategic positioning and serosorting. They have also chronicled, via participants’ accounts, many significant developments in the epidemic, including contemporary antiretroviral-based HIV prevention approaches (notably ‘treatment-as-prevention’ and U=U). This research continues to be important in the current era, for example providing insights into HIV testing patterns, mobility, PrEP, and the negotiation of sexual encounters on digital media apps.

On the 30th anniversary of the first seroconversion study in Australia – and timed to coincide with World AIDS Day – researchers who have been involved in the study over its lifetime provided reflections on the personal and community impact of the study and its main findings – over each specific era – as well as its impact across the different periods of the epidemic.

Development and validation of PozQoL: a scale to assess quality of life of PLHIV

Brown, G., Mikołajczak, G., Lyons, A., Power, J., Drummond, F., Cogle, A., & O’Connor, S. (2018). Development and validation of PozQoL: a scale to assess quality of life of PLHIV. BMC public health, 18(1), 527. 
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