How do patients with HIV/AIDS understand and respond to health value questions?

BACKGROUND: Utility assessment involves assigning values to experienced or unfamiliar health states. Pivotal to utility assessment, then, is how one conceptualizes health states such as "current health" and "perfect health." The purpose of this study was to ascertain how patients with HIV think about and value health and health states. METHODS: We conducted open-ended in-depth interviews with 32 patients with HIV infection purposefully sampled from a multicenter study of quality of life in HIV. After undergoing computer-assisted utility assessment using the rating scale, time tradeoff, and standard gamble methods, patients were asked how they thought about the utility tasks and about the terms "current health" and "perfect health." RESULTS: Patients understood the health valuation tasks but conceptualized health states in different ways. Many patients believed that "perfect health" was a mythical health state, and some questioned whether it was even desirable. "Current health" was variably interpreted as the status quo; deteriorating over time; or potentially improving with the hope of a cure. CONCLUSION: Patients with HIV infection vary in the way they conceptualize health states central to utility assessment, such as perfect health and current health. Better understanding of these issues could make important methodologic and policy-level contributions.