Developing, validating, and trialling the PozQoL scale

Image from ViiV Healthcare and Shutterstock’s HIV in View collection

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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

At the start of the project, the very first goal we had was that it had to fit on half an A4 page. That came from talking with support workers and clinicians. Half an A4 page was all the peer organisations could really add to their current evaluation surveys. And doctors don’t have enough time to go through anything longer than that with patients.

Associate Professor Graham Brown, PozQoL Project Lead Investigator

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

PozQoL was trialled in Australia in 2018 – 2019.

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)

Usability

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
  • Counselling
  • 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 used this feedback to create many of the PozQoL tools.

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

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 was led by Associate Professor Graham Brown and included staff from:

The PozQoL project received funding from ViiV Healthcare.