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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\u2019 sociodemographic characteristics and the perceived utility of facial angiofibroma.<\/jats:p>\n                  <\/jats:sec>\n                  <jats:sec>\n                    <jats:title>Methods<\/jats:title>\n                    <jats:p>\n                      In a structured interview format, participants recruited from dermatology clinics (\n                      <jats:italic>n<\/jats:italic>\n                      \u2009=\u2009100) 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.\n                    <\/jats:p>\n                  <\/jats:sec>\n                  <jats:sec>\n                    <jats:title>Results<\/jats:title>\n                    <jats:p>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.<\/jats:p>\n                  <\/jats:sec>\n                  <jats:sec>\n                    <jats:title>Conclusion<\/jats:title>\n                    <jats:p>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.<\/jats:p>\n                  <\/jats:sec>","DOI":"10.1007\/s11136-026-04362-1","type":"journal-article","created":{"date-parts":[[2026,7,30]],"date-time":"2026-07-30T16:42:32Z","timestamp":1785429752000},"update-policy":"https:\/\/doi.org\/10.1007\/springer_crossmark_policy","source":"Crossref","is-referenced-by-count":0,"title":["Dermatology patient-derived health utility of facial angiofibroma associated with tuberous sclerosis complex"],"prefix":"10.1007","volume":"35","author":[{"given":"Jessie T.","family":"Lu","sequence":"first","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"David K. 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The remaining authors have no conflicts of interest to declare.","order":1,"name":"Ethics","label":"<b>Conflicts of interest<\/b>","group":{"name":"EthicsHeading","label":"Declarations"}},{"value":"Ethics approval for this study was granted by the South Western Sydney Local Health District Human Research Ethics Committee (2024\/ETH01324).","order":2,"name":"Ethics","label":"Ethical approval","group":{"name":"EthicsHeading","label":"Declarations"}},{"value":"Written patient consent has been obtained for use of clinical images and informed consent was obtained from all individual participants included in the study.","order":3,"name":"Ethics","label":"Informed consent","group":{"name":"EthicsHeading","label":"Declarations"}}],"article-number":"253"}}