Open Access Highly Accessed Research

HIV-related stigma and physical symptoms have a persistent influence on health-related quality of life in Australians with HIV infection

Susan Herrmann1*, Elizabeth McKinnon1, Noel B Hyland2, Christophe Lalanne34, Simon Mallal15, David Nolan15, Olivier Chassany36 and Martin Duracinsky37

Author Affiliations

1 Institute for Immunology & Infectious Diseases, Royal Perth Hospital & Murdoch University, Murdoch, Perth, Australia

2 Sexual Health and Communicable Diseases, Royal Perth Hospital, Perth, Australia

3 Department of Clinical Research, PRO unit, Assistance Publique–Hopitaux de Paris, Saint-Louis Hospital, Paris, France

4 Inserm Unit UMR-SO 669, University Paris Sud, Paris Descartes, Paris, France

5 Department of Clinical Immunology & PathWest Laboratory Medicine, Royal Perth Hospital, Perth, Australia

6 University Paris-Diderot, Paris, France

7 Department of Internal Medicine and Infectious Diseases, Le Kremlin-Bicêtre, Assistance Publique–Hopitaux de Paris, Kremlin-Bicêtre Hospital, Paris, France

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Health and Quality of Life Outcomes 2013, 11:56  doi:10.1186/1477-7525-11-56

Published: 8 April 2013

Abstract

Background

The health-related quality of life (HRQL) of people living with HIV infection is an important consideration in HIV management. The PROQOL-HIV psychometric instrument was recently developed internationally as a contemporary, discriminating HIV-HRQL measure incorporating influential emotional dimensions such as stigma. Here we present the first within-country results of PROQOL-HIV using qualitative and quantitative data collected from a West Australian cohort who participated in the development and validation of PROQOL-HIV, and provide a comprehensive picture of HRQL in our setting.

Methods

We carried out a secondary analysis of data from Australian patients who participated in the international study: 15 in-depth interviews were conducted and 102 HRQL surveys using the PROQOL-HIV instrument and a symptom questionnaire were administered. We employed qualitative methods to extract description from the interview data and linear regression for exploration of the composite and sub-scale scores derived from the survey.

Results

Interviews revealed the long-standing difficulties of living with HIV, particularly in the domains of intimate relationships, perceived stigma, and chronic ill health. The novel PROQOL-HIV instrument discriminated impact of treatment via symptomatology, pill burden and treatment duration. Patients demonstrated lower HRQL if they were: newly diagnosed (p=0.001); naive to anti-retroviral treatment (p=0.009); reporting depression, unemployment or a high frequency of adverse symptoms, (all p<0.001). Total HRQL was notably reduced by perceived stigma with a third of surveyed patients reporting persistent fears of both disclosing their HIV status and infecting others.

Conclusions

The analysis showed that psychological distress was a major influence on HRQL in our cohort. This was compounded in people with poor physical health which in turn was associated with unemployment and depression. People with HIV infection are living longer and residual side effects of the earlier regimens complicate current clinical management and affect their quality of life. However, even for the newly diagnosed exposed to less toxic regimens, HIV-related stigma exerts negative social and psychological effects. It is evident that context-specific interventions are required to address persistent distress related to stigma, reframe personal and public perceptions of HIV infection and ameliorate its disabling social and psychological effects.

Keywords:
HIV/AIDS; Health related quality of life; Health status indicators; Stigma; Symptoms; PROQOL-HIV