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About PozQoL
What is PozQoL?
The PozQoL Scale is an empirically validated quality of life scale for people with HIV.
The Scale was developed through a partnership project of the Australian Research Centre in Sex, Health and Society (ARCSHS); ViiV Healthcare; the National Association of People with HIV Australia (NAPWHA); Living Positive Victoria; Positive Life NSW; and Queensland Positive People.
The Project was built on the principles of Greater Involvement of People Living with HIV (GIPA) .
It began because Australian HIV services expressed a need for better ways to evaluate their impact. More specifically, they needed an easier way to measure whether their programs improved people’s quality of life (QoL).
PLHIV led and were involved in the entire process of developing the PozQoL Scale. They:
- Identified key domains of wellbeing for PLHIV
- Chose the questions to ask within each domain
- Conducted research and analysed results
- Trialled the scale
- Wrote and published peer-reviewed journal papers
As a result, we can be sure that the domains of wellbeing measured by the Scale are relevant and important for PLHIV today. We also know that it is reliable and appropriate to use with PLHIV.
Benefits of using PozQoL
Using PozQoL can improve the quality of HIV services and improve health outcomes for people with HIV
Focus on quality of life (QoL) is important when working with people living with HIV (PLHIV). Asking the right questions can help service providers better understand their clients. This leads to better-informed decisions about their care.
The PozQoL Scale measures (QoL) among PLHIV. Therefore, service providers can use PozQoL as a tool to help them improve service quality and achieve better health outcomes for their HIV-positive patients and clients.
PozQoL is short and easy to use
The PozQoL Scale has only 13 items. This makes it easier for clinicians and community and peer support workers to use in their day-to-day work than longer scales.
Because PozQoL is so short, it is easy to quickly identify areas of concern, and spend more time focusing on client needs and priorities.
PozQoL is relevant to the current experiences of people living with HIV
PozQoL was developed between 2016 and 2019.
Some older scales were developed prior to modern HIV treatments. Many older treatments were less effective and had more complex dosing schedules. They also more commonly led to some health problems. Many of the older scales are also from a time before we knew that HIV treatment can prevent HIV transmission.
PozQoL’s design kept in mind more recent medical technologies for PLHIV (like PrEP and TasP/U=U). This is important because such technologies can greatly impact on PLHIV’s physical, mental, and social health.
As such, PozQoL is more relevant to the lived reality of many PLHIV today than some of the older scales .
PozQoL is available in multiple languages
PozQoL has been translated into several other languages. This makes it more accessible to people from non-English-speaking backgrounds.
PozQoL is free to use
PozQoL is free for non-commercial purposes.
We encourage anyone providing clinical, peer-led, or community-based services for PLHIV to take advantage of PozQoL in their day-to-day practice.
We also welcome researchers to conduct studies using or testing the PozQoL Scale.
Video Transcript
PozQoL — A valuable and exciting development for people with HIV
Hello! I’m Dr John Rule. I work as the Senior Research Manager for the National Association of People Living with HIV Australia. I’m wearing their t-shirt today.
I’m a person living with HIV and I’ve been involved in research in the HIV area for quite a long time.
It’s very exciting that the PozQoL Website has now been launched. And it’s incredibly exciting that the PozQoL Study has gotten to this point.
It’s important because this concept of the quality of life of people living with HIV… We really need to understand that this is a diverse experience.
So, it’s not only gay men but also women living with HIV. People from Aboriginal and Torres Strait Island backgrounds in Australia living with HIV. People from culturally and linguistically diverse backgrounds. People who have been diagnosed short term, long term, older, younger.
The great thing about the PozQoL Study is that it provides an instrument which can capture those diverse experiences and measure and record those experiences. So that a person’s particular situation or their quality of life at a particular moment can be shared, either with healthcare providers or health service providers.
And, importantly, it’s a reflection back to the person themselves about their changes in quality of life, which we hope are always able to be recorded as improving.
The people at the Australian Research Centre of Sex, Health and Society, led by Dr. Graham Brown, have done an incredible job in tapping into these domains of our experiences: psychological, social, health, functional. And I think those “domains” (that they’re called in the PozQoL Study) speak to the multi-dimensional experience of living with HIV in Australia at the moment.
This is so valuable to have this instrument developed. It’s so important that we will be able to use it in our community organisations. And also then extending, hopefully, to being able to be used by healthcare workers and clinicians, we hope, who will be able to use our own self-reporting about how we’re feeling to help in the clinical encounter and discussion about the management of our health.
Look, this has been a long journey. People living with HIV 20 years ago… We couldn’t think about this concept of quality of life because we’d only just moved into the phase of taking antiretroviral therapies and beginning to understand that with the advent of antiretroviral therapies, we did have a future.
About 10 years ago, with the study team, we’ve all started talking about the importance of then assessing the quality of life. And here we are now in 2020 with a great instrument that’s been developed and a dynamic website that’s being launched about the PozQoL work.
So, congratulations to all the team who have been working on this. But also, a big thank you from — to the extent that I can represent people living with HIV — thank you that this work has been prepared and we hope that it continues to be used.
Cheers
Header image provided by ViiV Healthcare
