Id2: Health Values for the Lipodystrophy Syndrome

Abstract

BACKGROUND: There is increasing concern about the potential effects of the lipodystrophy syndrome on the health and quality of life of HIV‐infected patients. OBJECTIVE: Understand patients' perception of the significance of the lipodystrophy syndrome's quality‐of‐life effects. DESIGN: Cross‐sectional study of volunteer HIV‐infected patients. SETTING: An urban, university‐affiliated HIV clinic in San Diego, California. Patients: 75 well‐educated, predominantly male, HIV‐infected patients. MEASUREMENTS: Patients' beliefs about the importance of appearance upon quality of life and preferences for hypothetical states performed using the standard gamble and time trade‐off methods. RESULTS: Almost all patients (95%) indicated that appearance was important to their quality of life, and 89% agreed that they would be “really bothered” if their HIV diagnosis were revealed by their appearance. Patients were willing, on average, to give up 2 years (s.d. 2.8), out of a 10‐year life‐expectancy, to live in good health rather than live with the syndrome, over and above what they would give up to be free of symptoms from HIV infection. Patients would take an additional 13% (s.d. 20%) risk of death to be cured of HIV infection when complicated by the syndrome (median increase in risk, 9%), above the risk they would accept to be cured of uncomplicated HIV infection. The amount that the patients would trade off was associated with beliefs about the importance of their appearance to quality of life (p = 0.0045) and worry that their appearance would expose their diagnosis by (p = 0.032). CONCLUSIONS: The physical effects of the lipodystrophy syndrome are important enough to cause many patients to consider accepting considerable risks of death or trading off substantial life‐expectancy to avoid the syndrome. Physicians may need to tailor HIV care to this aspect of patients' preferences.

Cost-effectiveness Implications of the Timing of Antiretroviral Therapy in HIV-Infected Adults

“…To put these results in perspective, an 80% probability of symptoms is similar to the highest prevalence level reported for any fat redistribution symptoms, including mild symptoms. 4,32 In a study conducted by Lenert et al, 61 HIVinfected patients evaluating a hypothetical lipodystrophy health state were willing to give up on average 2 years of a 10-year life expectancy (ie, 20%) to live in good health rather than live with lipodystrophy, over and above what they would give up to be free of symptoms of HIV infection. This is comparable to the quality-of-life reduction that was reported in another study 62 for the fraction of a life span in good health that respondents were willing to give up rather than live a full life span in the health state experienced 2 to 12 months after mastectomy.…”

Early HIV Treatment Led To Life Expectancy Gains Valued At $80 Billion For People Infected In 1996–2009

“…The quality of life of cART users may be worsened by effects such as lipodystrophy, or the accumulation or loss of fat in certain areas of the body; insomnia; diarrhea; and nausea. [28][29][30] However, there is a counterbalancing reduction in opportunistic infections. 10 Any potential indirect effects of treatment on longevity (for example, through renal disease) 31 would have been reflected in the analysis of survival from all causes of death.…”