Video transcript

The PozQoL scale — 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

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