Evidence map›Paper›PMID 42533156›Full record

ArticleQuality of life research : an international journal of quality of life aspects of treatment, care and rehabilitation2026

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

Jessie T Lu, David K E Chan, Grace X Li, Sophy T F Shih, Deshan F Sebaratnam

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Article in Quality of life research : an international journal of quality of life aspects of treatment, care and rehabilitation, 2026. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Not yet cited in PubMed.

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0citing papers in PubMed
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1 · What the graph read from it

What it found

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The abstract states no effect estimate the extractor could read, or names no intervention and outcome on the map, so this paper lights no cell and moves no belief. It is still indexed, cited and linked below.

2 · The registry

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3 · Its place in the literature

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4 · The record

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5 · Who and what money

Authors and funding

5 authors.

Jessie T LuSchool of Clinical Medicine, University of New South Wales Medicine and Health, Sydney, NSW, Australia. jessie.t.lu@student.unsw.edu.au.
David K E ChanMark Wainwright Analytical Centre, Stats Central, University of New South Wales, Sydney, NSW, Australia.
Grace X LiSchool of Clinical Medicine, University of New South Wales Medicine and Health, Sydney, NSW, Australia.
Sophy T F Shih *School of Clinical Medicine, University of New South Wales Medicine and Health, Sydney, NSW, Australia.
Deshan F Sebaratnam *School of Clinical Medicine, University of New South Wales Medicine and Health, Sydney, NSW, Australia.

Funding

No grant is acknowledged in the PubMed record.

6 · The paper itself

Abstract

purposeThe 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.

methodsIn 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.

resultsThe 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.

conclusionThe 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.

Indexed as

AngiofibromaFacial NeoplasmsQuality of LifeSkin NeoplasmsTuberous SclerosisAdolescentAdultAgedFemaleHealth StatusHumansMaleMiddle AgedSurveys and QuestionnairesYoung Adult

Identifiers

PMID42533156
PMCPMC13424800

What Socratic holds

Textmetadata
LicenceCC BY
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Registered trials

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Read under generation 80e0d062 · epoch 390. Bibliography from PubMed, PubMed Central and OpenAlex; grants from NIH RePORTER; trial links from ClinicalTrials.gov; estimates, votes and beliefs from the Socratic graph.