Development and validation of PozQoL: a scale to assess quality of life of PLHIV

Abstract

BackgroundAdvances in medical treatment for HIV are driving major changes in HIV policy and practice, including the encouragement of intake and adherence to HIV antiretroviral treatment (ART) by people living with HIV (PLHIV) for both personal and public health benefits. However, there is increasing recognition that achieving these goals will require a concurrent focus on the broader psychological and social wellbeing of PLHIV. Increasingly calls are being been made to incorporate a stronger focus on quality of life (QoL) of PLHIV into HIV prevention policy.In order to achieve this goal, HIV community, support and healthcare services need a valid, short and practical way to evaluate QoL of PLHIV accessing their programs. Current QoL measures are either long, complex, restricted in their use, or expensive. To address these shortcomings, the PozQoL study aimed to develop, test and validate a short and freely available scale assessing QoL among PLHIV.MethodsDrawing on a literature review, the prioritisation of domains and development of the initial pool of items was conducted in consultation with PLHIV community organisations in Australia. The items covered health concerns, psychological, social, and functional wellbeing. Testing involved a baseline and a follow-up survey of 465 adult Australians living with HIV. Participants were recruited through social media and various community organizations nationwide. The survey included the pilot PozQoL scale and other validated measures of health and wellbeing.ResultsGuided by an Exploratory Factor Analysis and conceptual considerations, a 13-item scale was developed. The PozQoL scale demonstrated high levels of fit in a Confirmatory Factor Analysis, very good internal consistency, test-retest reliability, and concurrent validity with other measures that approximated different aspects of QoL.ConclusionThe PozQoL scale has been tested in a diverse sample of adult PLHIV living in Australia, demonstrating very good reliability and validity. The insights from PLHIV and other stakeholders supported the balancing of statistical rigour and conceptual accuracy. The scale is now ready to be implemented and field-tested across a range of community, support and healthcare programs for PLHIV. This will make a significant contribution to the evaluation and enhancement of programs for PLHIV.

The significance and expectations of HIV cure research among people living with HIV in Australia

“…ART did not fully relieve these anxieties, with many participants describing experiences of consistently 'looking over their shoulders' to check they were okay. This form of vigilance, particularly about future ill-health or the impact of HIV-related stigma, is an ongoing part of the experience of living with HIV for many people that has been documented in various other studies [31,32]. Even if such worry is low level, it can be constant and wearing, negatively affecting an individual's overall quality of life [33,34].…”

The People Living with HIV (PLHIV) Resilience Scale: Development and Validation in Three Countries in the Context of the PLHIV Stigma Index

“…Despite the diversity of measures for resilience and the lack of measures specifically tailored for PLHIV, several studies among PLHIV have demonstrated associations between ‘resilience’ (as measured in a given study) and quality of life [9–11], depression [12–17], retention in care and treatment [18–22], and viral load [23]. Many of these studies have used resilience scales that assess general psychological resilience, i.e., not in the context of particular types of adversity.…”

“…This scale was primarily oriented around personal qualities that enable thriving in the face of adversity (e.g., “I try my hardest on every occasion” and “I can adapt to change”), but also captures certain features the developers believed to underpin resilience, such as having close personal relationships and experience achieving one’s goals [24]. Other scales used to measure resilience in the existing literature include the brief resilience scale (BRS) [9, 17, 28], the brief resilience coping scale (BRCS) [14, 29, 30], and the dispositional resilience scale [6, 31].…”

“…It was developed in Australia, and derived in part from the BRS. The PozQol scale, while intended for use among PLHIV, combines items specifically related to HIV (e.g., Managing HIV wears me out) with items assessing psychological resilience in general (e.g., I am enjoying life), and also includes items related to perceived effects of HIV on health status (e.g., I worry about the impact of HIV on my health) [9]. Therefore this scale may cover too diverse a range of domains, and with items directly related to HIV and not, to be useful as a measure specifically of resilience related to living with HIV.…”

Ageing with HIV: a qualitative longitudinal study of the lived experience of older homosexual men in regional Queensland

“…Many of the participants in this study fell into the 50-64 years age group and this study has been able to explore some of the key issues they were struggling with as HIV became 'the least of worries', and the burden of comorbidities increased with age. Informed by the emerging findings of the LPQ study and this study, QPP has increased the focus on quality of life with the implementation trial of the PosQoL quality of life scale across clinical, community and peer-led programmes during 2018 (Brown et al 2018). For the first time in over 20 years, the HIV Futures 9 survey incorporated this PosQoL scale to report that about 37% of respondents rated their quality of life as poor or very poor.…”