Adverse quality of life consequences of antiretroviral medications

Abstract

To identify the effects of antiretroviral therapy on quality of life, we performed a qualitative content analysis of the Medical Outcomes Study-Human Immunodeficiency Virus (MOS-HIV) Health Survey. We used focus groups to elicit views about antiretroviral effects on quality of life from a purposive sample of treatment-experienced participants. Data were analysed using a grounded theory approach. We appraised the content of the MOS-HIV against the themes identified from our analysis. Participants also completed the MOS-HIV survey and were asked whether the survey captured all important medication-related aspects of quality of life. Participants (n=38) viewed the use of antiretrovirals as a trade-off between poorer quality of life and being alive. The net effect was increased longevity but without hope and future. Features of quality of life included the downstream consequences of side effects and toxicities, tensions with health care providers and loss of independent decision-making, dilemmas regarding drugs and career, burdens of medication-taking responsibilities, and the stress of living life under a pretense and hiding an HIV diagnosis. The MOS-HIV missed or under-emphasised these features. Quality of life concerns of people living with HIV, particularly those related to medication use, are not well captured by the MOS-HIV. A broad concept of quality of life is needed to encompass all dimensions important to people living with HIV.

Acknowledgments

We gratefully acknowledge the support of the Ontario HIV Treatment Network (OHTN) in funding this study. We are also grateful to Derek Kam and Sarah Park at the Centre for Research on Inner City Health, St. Michael's Hospital, and Llewellyn Goddard, Treatment Resource Coordinator at the Toronto People with AIDS Foundation for their invaluable assistance in this project. We thank Marg Howell and Chris Cavacuiti from The Health Centre at 410, St. Michael's Hospital for their thoughtful contributions. Finally, we are indebted to all participants of this study, the people living with HIV, who graciously donated their time and shared their thoughts with us for this project. Laura Park-Wyllie is supported by a post-doctoral strategic training fellowship from the Canadian Institutes for Health Research and a Peterborough K.M. Hunter Fellowship award. Dr. Bayoumi is supported by a Career Scientist Award from the OHTN.