Balancing disfigurement and fear of disease progression: Patient perceptions of HIV body fat redistribution

Abstract

This study was conducted to identify and describe the perceived morphologic changes of body fat redistribution and related distress among persons taking combination antiretroviral therapy. Six focus group interviews were conducted in four different US cities with men and women (n=58) who reported antiretroviral-related symptoms of body fat loss and/or gain. Interview data were audiotaped, transcribed verbatim and systematically analysed using inductive techniques. Physical discomfort and impairment and psychological and social distress were reported across sex, sexual orientation and geographic subgroups. While participants acknowledged that antiretroviral drugs were keeping them alive, there was tension between the desire for life-sustaining treatment and optimal quality of life. Some participants engaged in harmful heath behaviours in an attempt to control bodily changes (e.g. non-adherence to antiretroviral regimen). Participants feared that fat loss represented disease progression and worried that visible changes would lead to unintentional disclosure of their HIV status. Although a potential source of support, healthcare providers were commonly perceived as ignoring and, in so doing, discrediting patient distress. Participants recognised the limitations of current lipodystrophy treatment options, yet a cure for the syndrome seemed less important to them in the short term than simply being listened to and the powerful, but oblique sources of distress addressed.

Acknowledgments

Thomas Nevin, M.S., M.B.A., AACTG Operations Center; Ann Walawander, MA, AACTG Data Management Center; Site 2301, Jane A. Russell, B.S.N.; and Cynthia Mondesir, The Ohio State University College of Medicine & Public Health; Site 6201, Harvey Friedman, M.D.; Chris Helker, R.N., M.S.P.H.; and Doris Shank, R.N., University of Pennsylvania School of Medicine; Site 0201, Charles Flexner, M.D.; Denise Jones, Johns Hopkins University School of Medicine; Site 0701, Douglas D. Richman, M.D.; Jill Kunkel, R.N., University of California San Diego School of Medicine. The authors received support from: Drs. Reynolds (AI25924), Neidig (AI25924), and Holmes (AI01482) were partially supported by grants from the National Institute of Allergy and Infectious Disease, Adult AIDS Clinical Trials Group. Dr. Gifford was supported by the Adult AIDS Clinical Trial Group (grants A1027670, AI038868), by an Advanced Research Career Development Award for HSR&D from the Department of Veterans Affairs, and a Generalist Physician Faculty Scholar Award from the Robert Wood Johnson Foundation. Dr. Wu is supported by the AIDS Clinical Trials Group (U01 AI27668) and GCRC (RR-00035). We also wish to express our appreciation to Robert J. Fass, M.D., The Ohio State University, College of Medicine & Public Health and Robert A. Zackin, Sc.D., AACTG Operations Center, in remembrance for their contributions to this project.