Evidence map›Paper›PMID 42671509›Full record

ArticleJournal of patient-reported outcomes2026

Impact of facial telangiectasias and anemia on quality of life in patients with hereditary hemorrhagic telangiectasia: a cross-sectional study using FACE-Q.

Nadia Sadok, Franziska Bielefeld, Carl Nikola Martin, Eva-Marie Skoda, Katharina Klinger, Felicia Toppe, Marie Carolin Schleupner, Lukas Boosfeld, Björn Kropf, Noemi Voß and 6 more

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Article in Journal of patient-reported outcomes, 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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1 · What the graph read from it

What it found

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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

16 authors.

Nadia SadokDepartment of Otorhinolaryngology, Head and Neck Surgery, Essen University Hospital, and VASCERN HHT Reference Center, University of Duisburg-Essen, Hufelandstrasse 55, 45122, Essen, Germany. nadia.sadok@uk-essen.de.ORCID https://orcid.org/0000-0002-0207-7621
Franziska BielefeldDepartment of Otorhinolaryngology, Head and Neck Surgery, Essen University Hospital, and VASCERN HHT Reference Center, University of Duisburg-Essen, Hufelandstrasse 55, 45122, Essen, Germany.
Carl Nikola MartinLVR University Hospital Essen, Clinic for Psychosomatic Medicine and Psychotherapy, Clinics and Institute of the University of Duisburg-Essen, University of Duisburg-Essen, Essen, North Rhine-Westphalia, Germany.
Eva-Marie SkodaLVR University Hospital Essen, Clinic for Psychosomatic Medicine and Psychotherapy, Clinics and Institute of the University of Duisburg-Essen, University of Duisburg-Essen, Essen, North Rhine-Westphalia, Germany.
Katharina KlingerDepartment of Otorhinolaryngology, Head and Neck Surgery, Essen University Hospital, and VASCERN HHT Reference Center, University of Duisburg-Essen, Hufelandstrasse 55, 45122, Essen, Germany. katharina.klinger@uk-essen.de.
Felicia ToppeDepartment of Otorhinolaryngology, Head and Neck Surgery, Essen University Hospital, and VASCERN HHT Reference Center, University of Duisburg-Essen, Hufelandstrasse 55, 45122, Essen, Germany.
Marie Carolin SchleupnerDepartment of Otorhinolaryngology, Head and Neck Surgery, Essen University Hospital, and VASCERN HHT Reference Center, University of Duisburg-Essen, Hufelandstrasse 55, 45122, Essen, Germany.
Lukas BoosfeldDepartment of Otorhinolaryngology, Head and Neck Surgery, Essen University Hospital, and VASCERN HHT Reference Center, University of Duisburg-Essen, Hufelandstrasse 55, 45122, Essen, Germany.
Björn KropfLVR University Hospital Essen, Clinic for Psychosomatic Medicine and Psychotherapy, Clinics and Institute of the University of Duisburg-Essen, University of Duisburg-Essen, Essen, North Rhine-Westphalia, Germany.
Noemi VoßDepartment of Otorhinolaryngology, Head and Neck Surgery, Essen University Hospital, and VASCERN HHT Reference Center, University of Duisburg-Essen, Hufelandstrasse 55, 45122, Essen, Germany.
Antonia LakomekDepartment of Otorhinolaryngology, Head and Neck Surgery, Essen University Hospital, and VASCERN HHT Reference Center, University of Duisburg-Essen, Hufelandstrasse 55, 45122, Essen, Germany.
Anna-Lena ValinaDepartment of Otorhinolaryngology, Head and Neck Surgery, Essen University Hospital, and VASCERN HHT Reference Center, University of Duisburg-Essen, Hufelandstrasse 55, 45122, Essen, Germany.
Christina KaiserDepartment of Otorhinolaryngology, Head and Neck Surgery, Essen University Hospital, and VASCERN HHT Reference Center, University of Duisburg-Essen, Hufelandstrasse 55, 45122, Essen, Germany.
Julia GarvertDepartment of Otorhinolaryngology, Head and Neck Surgery, Essen University Hospital, and VASCERN HHT Reference Center, University of Duisburg-Essen, Hufelandstrasse 55, 45122, Essen, Germany.
Stephan LangDepartment of Otorhinolaryngology, Head and Neck Surgery, Essen University Hospital, and VASCERN HHT Reference Center, University of Duisburg-Essen, Hufelandstrasse 55, 45122, Essen, Germany.
Freya DroegeDepartment of Otorhinolaryngology, Head and Neck Surgery, Essen University Hospital, and VASCERN HHT Reference Center, University of Duisburg-Essen, Hufelandstrasse 55, 45122, Essen, Germany. freya.droege@uk-essen.de.

Funding

No grant is acknowledged in the PubMed record.

6 · The paper itself

Abstract

backgroundHereditary hemorrhagic telangiectasia (HHT) is an autosomal dominant disorder characterized by telangiectasias and visceral arteriovenous malformations. While the clinical manifestations are well described, its psychosocial impact-particularly with regard to visible facial telangiectasias and anemia-related appearance changes-remains insufficiently studied. This study aimed to assess appearance-related quality of life in individuals with hereditary hemorrhagic telangiectasia.

methodsIn this cross-sectional, single-center study, adults with hereditary hemorrhagic telangiectasia were recruited at a specialized HHT center between November 2023 and May 2024. Participants completed validated patient-reported outcome measures, including the Facial Assessment and Cosmetic Enhancement (FACE-Q) questionnaire and the Patient-Reported Outcomes Measurement Information System (PROMIS-29 +2) profile. Besides that, a standardized questionnaire assessing demographic and clinical characteristics, subjective perceptions of pallor, and cosmetic disturbance was administrated. Disease severity was assessed using the Epistaxis Severity Score and the Toronto Severity Index. Analyses were performed for the overall cohort and stratified by sex to explore potential sex differences in health-related quality of life and symptom perception. Multivariate linear regression analyses were performed to identify independent predictors of FACE-Q subscale outcomes.

resultsA total of 116 participants with HHT were included (mean age 60 ± 14 years; 62% were female). Subjective appearance perception showed strong effects: perceiving pallor or tiredness due to low hemoglobin levels was associated with greater appearance-related psychological distress (adjusted β = -9.09, 95% CI -17.23 to -0.94), whereas perceiving facial telangiectasias as cosmetically disturbing was associated with multiple appearance-related outcomes, including lower social function (adjusted β = -9.51, 95% CI -18.04 to -0.99), greater appearance-related psychological distress (adjusted β = -9.33, 95% CI -16.51 to -2.16), and lower satisfaction with the nose (adjusted β = -17.39, 95% CI -28.94 to -5.84). In contrast, objective clinical parameters and overall disease severity assessed by the Epistaxis Severity Score and the Toronto Severity Index were not independently associated with appearance-related quality of life.

conclusionsIn HHT, appearance-related quality of life is driven predominantly by subjective perception and psychosocial factors.

Indexed as

AnemiaFaceQuality of LifeTelangiectasia, Hereditary HemorrhagicTelangiectasisAdultAgedCross-Sectional StudiesFemaleHumansMaleMiddle AgedPatient Reported Outcome MeasuresSeverity of Illness IndexSurveys and QuestionnairesSymptom BurdenAnemiaFaceHereditary hemorrhagic telangiectasiaPatient reported outcome measuresPatient satisfactionQuality of life

Identifiers

PMID42671509
PMCPMC13530060

What Socratic holds

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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.