Lipodystrophy too high a price for two years of extra life, say patients

The majority of HIV-positive Californians would be prepared to have their life expectancy shortened by over two years if it meant avoiding the disfigurement of lipodystrophy, according to a study published in the American Journal of Medicine.

Investigators examined patient attitudes towards lipodystrophy by asking 75 people with HIV to complete a computer based questionnaire describing two people doing well on HAART.

One had developed the body shape changes associated with lipodystrophy. Investigators used photographs illustrating severe body shape changes taken from a study published in the New England Journal of Medicine.

Study participants were asked to assess the impact of HIV infection on their quality of life. On average, having HIV was assessed to have reduced quality of life by 26%, with study participants saying that having visible symptoms of lipodystrophy would mean that their quality of life was eroded by a further 20%.

When patients were given the choice between starting treatment with HAART and the development of disfiguring symptoms of lipodystrophy, two thirds of patients said that they would be prepared to give up one year of extra life to avoid developing the condition (mean 2.1 years), and on average, people in the study said that they were prepared to increase their risk of death by 13% to avoid lipodystrophy.

The authors conclude that “the results illustrate how optimisation of therapy for HIV therapy…requires giving a detailed understanding of how a patient values the specific risks to quality of life inherent in proposed treatments” adding, “it is possible that some patients will want to take risks to avoid the side effects of therapy, and that preference should be respected.”