OBJECTIVES: Patients with rare genetic diseases of obesity, including monogenic or syndromic, often present with early-onset severe obesity and hyperphagia, characterized by an extreme, persistent, unsatisfied drive to consume food. Persistent hyperphagia-associated behaviors can lead to marked negative impact on the lives of patients. While utility values associated with general obesity are available in published literature, no published studies have estimated utilities associated with hyperphagia and any impact on patient’s quality of life beyond obesity. The purpose of this study was to estimate health state utilities associated with various levels of hyperphagia.

METHODS: In time trade-off (TTO) interviews, participants from the general population in the United Kingdom valued four health state vignettes drafted based on literature review and input from clinicians who treat patients with hyperphagia. Health states described patients with no hyperphagia, as well as mild, moderate, and severe hyperphagia. A composite TTO (cTTO) approach was followed, with health states perceived to be better than dead valued via conventional trade-off methods and health states perceived to be worse than dead valued with a lead-time procedure.

RESULTS: A total of 215 participants completed interviews (39.5% male; mean [range] age 39.1 [18–76] years). Mean (SD) utilities were 0.98 (0.02) for no hyperphagia, 0.91 (0.10) for mild hyperphagia, 0.70 (0.30) for moderate hyperphagia, and 0.22 (0.59) for severe hyperphagia. When compared to the health state with no hyperphagia, disutilities (i.e., utility decreases) were -0.08 for mild hyperphagia, -0.28 for moderate hyperphagia, and -0.77 for severe hyperphagia.

CONCLUSIONS: This novel research showed greater severity of hyperphagia is associated with lower health state utilities. Utilities for severe hyperphagia were similar to other severe health states that impact all aspects of quality-of-life, such as late-stage pancreatic cancer. This study underscores the need for effective treatments that address the substantial quality-of-life impact of severe hyperphagia.