Developing, validating, and trialling the PozQoL scale

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What was the PozQoL project?

The PozQoL project started as a response to a need expressed by HIV community, support, and healthcare services across Australia: a short, practical, and reliable way to measure their clients’ quality of life (QoL).

Existing QoL measurement tools were often too lengthy, expensive, or disconnected from the contemporary, real-world experiences of people living with HIV (PLHIV).

To address this, the PozQoL project aimed to create a new validated scale for measuring QoL among PLHIV that was:

⚖️ Able to measure quality of life overall
🧩 Able to measure quality of life within specific domains of wellbeing
đź“… Able to detect changes in quality of life over time
đź’ˇ Relevant to the experiences of people living with HIV today
🖊️ Short and easy enough to use for clinical, community, and peer workers to incorporate into their day-to-day practice
🌏 Freely available for anyone to use

Head shot of Graham Brown

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 a 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.

Graham Brown

Lead Investigator, PozQoL Project

How was the PozQoL scale developed?

PozQoL was created through a rigorous and collaborative process involving:

  • Collaboration with PLHIV peer-led organisations: PLHIV were central to defining QoL domains and shaping the scale.
  • Review of existing research: The team synthesised the latest studies to identify what matters most for PLHIV.
  • Item development and testing: Over 100 potential questions were refined through surveys and expert input to create a concise, relevant tool.

The result was a 13-item questionnaire, designed to reflect the lived realities of PLHIV while being easy to implement in practice.

Validation: What makes PozQoL trustworthy?

Research shows that PozQoL is a reliable way to measure quality of life of PLHIV

The original Australian validation

PozQoL was first validated between 2016-2018 using a sample of 465 (aged 18 and older) adults living with HIV. The process involved:

  • Exploratory and Confirmatory Factor Analyses (EFA and CFA): These analyses confirmed that the scale reliably measures the four QoL domains.
  • Internal consistency: PozQoL demonstrated excellent reliability, with a Cronbach’s alpha of 0.95.
  • Test-retest reliability: The scale’s results were stable over time, indicating that it reliably measures QoL even when reassessed.

These results were further supported by strong correlations with established QoL tools, confirming PozQoL’s accuracy and sensitivity.

The Turkish validation

PozQoL was adapted and validated for Turkish-speaking PLHIV through a study conducted between 2022 and 2023 with 130 participants. The process involved:

  • Translation and cultural adaptation: The scale was translated into Turkish using the translation-back-translation methodology to ensure linguistic and cultural accuracy. An expert panel reviewed the adaptation to confirm its relevance for Turkish PLHIV.
  • Exploratory and Confirmatory Factor Analyses (EFA and CFA): These analyses confirmed that the Turkish items grouped into the same four domains as the original scale, and that the Turkish scale reliably measured those four domains.
  • Internal consistency: The Turkish version achieved strong reliability, with a Cronbach’s alpha of 0.81 for the overall scale, indicating high internal consistency.
  • Test-retest reliability: PozQoL demonstrated high stability over time, with an Intraclass Correlation Coefficient (ICC) of 0.92.

This validation confirmed that the Turkish adaptation of PozQoL is a reliable and meaningful tool for assessing QoL of Turkish-speaking people living with HIV.

The successful validation of PozQoL in both English (Australia) and Turkish (Turkey) contexts highlights its adaptability across diverse cultural settings. While other translations are yet to be empirically validated, the results so far increase confidence in PozQoL’s ability to be valid and reliable in other languages and cultural contexts.

Sensitivity: Can PozQoL track changes in quality of life?

PozQoL is able to identify changes in PLHIV quality of life over time

A 2018-2019 sensitivity trial (awaiting publication) evaluated PozQoL’s ability to detect changes in health-related quality of life over time, particularly after targeted interventions such as workshops or support programs.

  • Participants: 95 clients from six organisations, including newly diagnosed PLHIV workshops, PLHIV retreats, and welfare/community support services.
  • Methods: Clients completed PozQoL at baseline and 2–3 months after interventions. Changes in total and domain-specific QoL scores were analysed using paired t-tests.
  • Key findings: PozQoL is sensitive enough to detect meaningful changes in QoL within 2–3 months, making it a valuable tool for evaluating the impact of interventions and services. For longer-term support services, annual or semi-annual use is recommended.

Usability: How practical is PozQoL in different settings?

PozQoL is practical and beneficial for health and community services to use in day-to-day practice

A 2018-2019 usability trial (awaiting publication) examined whether PozQoL was easy to implement, useful for staff and clients, and practical for day-to-day operations.

  • Participants: Staff from seven organisations (19 respondents to surveys; 9 participants in interviews).
  • Methods: Surveys and semi-structured interviews explored usability, acceptability, and barriers to implementation.
  • Key findings: Overall, PozQoL was well-received and integrated into many organisations, particularly in community settings. Suggested improvements included creating digital tools for easier data analysis and enhancing implementation guidance.

Several key recommendations for improving usability were identified during the trial. These have since been addressed:

  • PozQoL is now available in over 30 languages, making it accessible to more diverse client groups.
  • Our Using PozQoL pages and implementation kit have been updated with clearer guidance, including examples and strategies to support data collection, collation, and interpretation.
  • ViiV Healthcare has developed an online digital tool that allows users to complete PozQoL in 5-10 minutes and email, print, or save their results for personal reference or to share with healthcare providers.