Valuing quality of life among people with HIV

The PozQoL scale is a short quality of life scale that can help service providers improve care quality and health outcomes for people living with HIV.

Using PozQoL can help you:

  • Measure changes in quality of life among people living with HIV
  • Better understand the needs of people living with HIV
  • Ensure the care provided for people living with HIV is more person centred
  • Evaluate the impact of services and programs for people living with HIV
Dr John Rule, Senior Research Manager from the National Association of People with HIV Australia (NAPWHA), shares his thoughts on the importance of quality of life for people living with HIV and the value of PozQoL to people living with HIV, community organisations, and health services. (Transcript below)

What you’ll find on our site

The information and resources on our site are designed to help you get the most out of the PozQoL scale and improve the way you work with people living with HIV.

Quality of life among people living with HIV

  • What quality of life is and how it is affected by HIV
  • How to measure quality of life of people with HIV
  • Why focus on quality of life when working with people with HIV

About PozQoL

  • Benefits of using PozQoL
  • About the PozQoL project
  • How the PozQoL scale was developed and tested

Using PozQoL

  • How to administer PozQoL
  • Calculating, understanding, and using PozQoL scores
  • Using PozQoL in your work

PozQoL scale and tools

  • Download the PozQoL scale in your language
  • Download tools to help you use PozQoL

PozQoL Stories

  • Read stories about other people’s experiences using PozQoL
  • Find out where and how PozQoL is being used

Information for clinicians

  • Links to information to help use PozQoL in clinical settings with patients who are living with HIV

Information for community and peer workers

  • Links to information to help use PozQoL in community or peer work with people living with HIV

Information for researchers

  • Links to information to help use PozQoL in research involving people living with HIV

PozQoL was developed by

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.


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Images provided by ViiV Healthcare or sourced from ViiV Healthcare and Shutterstock’s HIV in View collection