A survey of HIV-infected patients in California suggests that many would be willing to sacrifice years of life to avoid the potentially disfiguring lipodystrophy syndrome.

Dr. Leslie A. Lenert of the VA San Diego Healthcare System and colleagues aimed to identify how patients' beliefs about lipodystrophy could alter their desire to use HIV medications. The investigators asked patients how many years of life they would give up to avoid HIV complicated by lipodystrophy. Seventy-five patients, 3 women and 72 men, ages 30 to 50, completed the survey. Eighty-two percent had at least some college education. The authors reported their findings in the American Journal of Medicine (2002;113;3:229-232).

On a visual line scale with "death" at one end and "perfect health" at the other, patients rated HIV infection as causing a 26 percent decrease in quality of life, Lenert said. "The subjects thought that the quality of life would be eroded by a further 20 percent by lipodystrophy," he said. Participants thought HIV and lipodystrophy would degrade quality of life by 46 percent, the report indicates. In a hypothetical scenario, three-quarters of the patients said they were willing to increase their risk of dying by at least 1 percent if they could avoid lipodystrophy. On average, subjects were willing to take a 13 percent additional risk of death in order to avoid the disfiguring disorder.

"The results illustrate how optimization of therapy for HIV infection and other disorders requires gaining a detailed understanding of how a patient values the specific risks to quality of life inherent in proposed treatments," the authors wrote. "This is a discussion that needs to go on between physicians and patients, and not just for antiretroviral therapy," Lenert added. "It's possible that some patients will want to take risks to avoid the side effects of therapy, and that preference should be respected."

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