Dermatology patient-derived health utility of facial angiofibroma associated with tuberous sclerosis complex

Purpose The majority of patients with Tuberous Sclerosis Complex have cutaneous manifestations, the most common being facial angiofibroma (FA). The impact of facial angiofibroma on quality of life has not been comprehensively evaluated, and a health state utility has not previously been determined. The purpose of this study was to calculate the health utility of facial angiofibroma from the perspective of dermatology patients and explore any associations between participants’ sociodemographic characteristics and the perceived utility of facial angiofibroma. Methods In a structured interview format, participants recruited from dermatology clinics ( n = 100) were asked to imagine themselves in each of four health states (monocular blindness, binocular blindness, almost-clear facial angiofibroma and moderate facial angiofibroma). Visual analogue scale, time trade-off and standard gamble were conducted for each health state and each outcome was converted into a health state utility. Results The adjusted mean health state utilities were 0.88 [0.84,0.92], 0.95 [0.91,0.99] and 0.94 [0.91,0.98] for almost-clear facial angiofibroma, by Visual Analogue Scale, Time Trade-Off and Standard Gamble, respectively, and 0.68 [0.64,0.72], 0.88 [0.84,0.92] and 0.91 [0.87,0.94] for moderate facial angiofibroma. Participants theoretically elected to sacrifice 6.8 years of their remaining 57 years of life (12%) and accept a 9% risk of immediate death to receive curative treatment for moderate facial angiofibroma. Conclusion The health state utility of moderate facial angiofibroma was significantly poorer than almost-clear facial angiofibroma. This highlights that reducing the severity of facial angiofibroma can deliver potential gains in quality of life.