Developing, validating, and trialling the PozQoL Scale
The PozQoL Project’s ambitious goal
The PozQoL Project started as a response to a need expressed by HIV community, support, and healthcare services across Australia. They needed a short, practical, and reliable way to measure their clients’ quality of life.
The PozQoL Project’s goal was to create a new validated quality of life scale for people with HIV, that is:
- Able to measure quality of life overall as well as within specific domains of wellbeing
- Able to detect changes in quality of life over time
- Relevant to the experiences of people living with HIV today
- Short enough — and easy enough to use — for clinical, community, and peer workers to use in their day-to-day practice
- Freely available for anyone to use
Developing and validating the PozQoL Scale
The PozQoL Scale was developed and validated in 2016 – 2018.
Peer-led PLHIV organisations were involved in:
- Conceptualising meaningful and relevant domains of wellbeing for PLHIV
- Deciding the best items to include in order to measure each domain of wellbeing
- Recruiting people with HIV for the validation study
- Collecting data and analysing the results
- Refining the final scale
The PozQoL Scale was validated on a sample of 465 adults (aged 18 and older) living with HIV in Australia. PozQoL Scores were compared with other established quality of life scales.
Analysis revealed excellent inter-item and test-retest reliability. It also showed significant overlap and consistent correlations with other QoL measures.
In other words, the results showed PozQoL to be a reliable way to measure quality of life of PLHIV.
Trialling PozQoL for usability and sensitivity
The aim of the trial was to assess:
- How easy staff found PozQoL to use and whether they thought it was useful (usability)
- If it could detect changes in PLHIV’s QoL over time (sensitivity)
Ten organisations that provide health and social support services for PLHIV took part in the trials. They trialled PozQoL in diverse peer- and non-peer-led services, such as:
- Peer-led PLHIV workshops
- Case management
- Welfare support
- Clinical services (including a hospital clinic and high-case-load general practice)
Overall, most staff found PozQoL easy to use in their day-to-day work. Staff who used PozQoL rated it highly, saying that it:
- Was easy to use
- Helped them to better understand the client groups they were working with
- Enhanced communication with clients
- Raised topics for important conversations that may not have happened otherwise
Some staff did have challenges integrating PozQoL into their day-to-day practice. This was especially true of those in clinical settings.
Their most common challenges were:
- Needing to set up new data collection and storage processes for PozQoL data
- Running out of time during appointments to talk to clients about their results
- Not having a quick and easy way to calculate and use the scores
We are using this feedback to create new and better tools and resources.
If you have any feedback after using PozQoL, please let us know. We rely on user feedback to continue improving PozQoL and making it easier to use for everyone.
Sensitivity was assessed using matched baseline and follow-up data pairs from 95 PLHIV. Organisations collected this data between July 2018 and March 2019.
PozQoL was sensitive enough to detect changes in quality of life over time. This was true for PozQoL Scores for overall quality of life and for each domain of wellbeing.
Most importantly, PozQoL helped services measure their impact on PLHIV’s QoL. For example, results showed that the average QoL scores increased for PLHIV who:
- Attended intensive 1.5- to 2-day peer-led workshops for people with recent HIV diagnoses measured
- Attended peer retreats focussing on social connection and stigma resilience
- Received welfare and community support
The PozQoL Project team
In order to create PozQoL, PLHIV peer organisations, health and social researchers, and health industry partners pooled resources and worked together.
The PozQoL Project team included staff from:
- The National Association of People with HIV Australia (NAPWHA)
- Living Positive Victoria
- Positive Life NSW
- Queensland Positive People (QPP)
- Australian Research Centre in Sex, Health and Society (ARCSHS) at La Trobe University
The PozQoL Project received funding from ViiV Healthcare.
Dr Duncan Short, Director of Global Implementation Science at ViiV Healthcare, talks about ViiV’s commitment to improving the lives of people living with HIV, and how this underpinned their support of the PozQoL Project. (Transcript below »)
‘ViiV Healthcare on supporting the PozQoL Project’ with Dr Duncan Short, Director of Global Implementation Science at ViiV Healthcare
Hi! I’m Duncan Short from ViiV Healthcare.
Improving the quality of life of people living with HIV is a fundamental driver of our company. And our support of the development and testing of the PozQoL is an important example of this.
ViiV have been involved from the outset. And we’re proud to have supported La Trobe University to lead this initiative — to help clinicians and support workers to assess and understand the needs of people living with HIV.
We’re also delighted to be able to support the development of this website that brings together in one place all of the resources associated with the PozQoL. To make it easier for different healthcare organisations, researchers, community workers, to access and understand what the PozQoL can offer and how it can be implemented.
We really hope you find this website useful, as we all work to improve the lives of those living with HIV.
Header image from ViiV Healthcare and Shutterstock’s HIV in View collection