PozQoL Project

Background to the PozQoL Project

The PozQoL Project came about during our work with HIV organisations during Stage 2 of the W3 Project. They were finding it hard to evaluate their programs without having a simple way to measure client quality of life (QoL). They expressed a need for a short, practical, and reliable way to both measure and track changes in QoL among people living with HIV (PLHIV).

The PozQoL Project was built on the principles of Greater Involvement of PLHIV (GIPA).

What this meant in practice was that:

• The study was a direct partnership with peer-led organisations representing PLHIV
• PLHIV had meaningful involvement in all aspects of the planning, research, analysis, and decision making
• The insights from consultations with PLHIV and other stakeholders helped us balance statistical rigour, conceptual accuracy, and practical use

Objectives

We wanted to create a new, validated scale for PLHIV that was:

• Able to measure QoL overall as well as within specific domains of wellbeing
• Sensitive enough to detect changes in QoL over time
• Relevant to the experiences of people living today with HIV
• 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

Methods and results

The PozQoL Project had 3 stages:

• Reviewing the literature and currently available scales
• Drafting and testing the scale items
• Piloting the scale in practice

Stage 1: Reviewing the literature

Stage 1 involved a systematic review of the literature and QoL scales that currently existed. At this time, we identified 4 important domains of wellbeing:

• Psychological
• Social
• Health concerns
• Functional

We also generated a draft scale of over 100 items that covered these 4 domains.

Stage 2: Testing the items

In the 2nd stage, a panel of 13 experts from PLHIV peer organisations, as well as 5 other HIV experts and stakeholders, pre-tested the 100 draft items. During this process, we reduced the pool of draft items to 64.

We then created a survey that included these remaining items as well as other validated measures of health and wellbeing. 465 adult PLHIV from across Australia completed the survey two times, one month apart.

Comparison of people’s answers to the PozQoL and the validated items showed us that the PozQoL items did in fact measure what we wanted them to measure.

Comparison of people’s answers from one survey to the next showed us that their answers were consistent across time. (In other words, it showed us that the results reflected their overall QoL, rather than how they felt on the day).

Finally, the analysis allowed us to narrow the scale down to 13 items across the 4 domains of wellbeing.

Stage 3: Testing sensitivity and usability

In the last stage, we piloted PozQoL across 12 community and clinical settings to assess :

• If it could detect changes in PLHIV’s QoL over time (sensitivity)
• How easy staff found PozQoL to use and whether they thought it was useful (usability)

The results showed us that PozQoL was, indeed, sensitive enough to detect changes in quality of life. This was true for PozQoL Scores for overall quality of life and for each domain of wellbeing.

We also found that most staff found PozQoL easy to use in their day-to-day work and that it provided a range of other benefits, including:

• Helping them to better understand the client groups they were working with
• Enhancing their communication with clients
• Raising important topics of conversation that may not have come up otherwise

Using the PozQoL Scale

Using the PozQoL Scale when working with PLHIV can help improve care quality and outcomes, program evaluation, and research.

PozQoL is now the quality of life indicator used to inform the Australian National HIV Strategy. Most Australian PLHIV peer programs, an increasing number of community support programs, some clinical services, and a growing number of research studies around the world use PozQoL in their work.

If you are interested in using PozQoL in your work, the PozQoL website has:

• The PozQoL Scale in 16 languages
• Simple instructions for using PozQoL in practice
• Tools and calculators to help you calculate, understand, and use PozQoL results
• Specific information for clinicians, peer and community workers, and researchers
• Stories and experiences from people using PozQoL in their own work