Evidence map›Paper›PMID 40751163›Full record

ArticleOrphanet journal of rare diseases2025

Family planning, sexual activity and contraception in hereditary hemorrhagic telangiectasia: a European survey study.

Josefien Hessels, Marco C Post, Sanne Boerman, Freya Droege, Olivier Dupuis, ePAG, Urban W Geisthoff, Pernille D Haahr, Anette D Kjeldsen, Johannes-Jurgen Mager and 2 more

Abstract read
PubMed Full text at PMC Publisher
In one paragraph

Article in Orphanet journal of rare diseases, 2025. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 1 paper.

0numbers the graph read from it
0cells of the map it votes in
1citing papers in PubMed
–field-weighted citation impact
1 · What the graph read from it

What it found

Each row is one number read from the abstract, on the scale the paper reported it, with its interval. Left of the dashed line favours the treatment, right favours the comparator. Under each row is the sentence it came from. New to these charts? A ten-minute tutorial.

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

The trial behind it

Trials whose registry record cites this paper, or whose number appears in the abstract. A trial that started after this paper was published is citing it as background, not reporting it.

Neither the registry nor the abstract names a trial number. If this is a trial report, that itself is worth knowing.

3 · Its place in the literature

Who cites it

1 citing paper in PubMed.

  1. Article
4 · The record

Corrections and comments

PubMed lists nothing against this paper. Absence here is not a guarantee, only a check that was made.

5 · Who and what money

Authors and funding

12 authors.

Josefien HesselsPulmonology Department, St. Antonius Hospital, Nieuwegein, The Netherlands. j.hessels@antoniusziekenhuis.nl.ORCID 0000-0002-9001-9893
Marco C PostVASCERN HHT European Reference Centre and Department of Cardiology, St. Antonius Hospital, Nieuwegein, The Netherlands.
Sanne BoermanPulmonology Department, St. Antonius Hospital, Nieuwegein, The Netherlands.
Freya DroegeVASCERN HHT European Reference Centre and Otorhinolaryngology Department, Essen University Hospital, Essen, Germany.
Olivier DupuisDepartment of Obstetrics and Gynecology, Hospices Civils de Lyon, Lyon, France.
ePAG
Urban W GeisthoffVASCERN HHT European Reference Centre and Department of Otorhinolaryngology, Head and Neck Surgey, University Hospital of Marburg and Phillips Universität Marburg, Marburg, Germany.
Pernille D HaahrVASCERN HHT European Reference Centre and Department of Otorhinolaryngology Head and Neck Surgery, Odense University Hospital, Odense, Denmark.
Anette D KjeldsenVASCERN HHT European Reference Centre OUH and Department of Otorhinolaryngology Head and Neck Surgery, Odense University Hospital, Odense, Denmark.
Johannes-Jurgen MagerVASCERN HHT European Reference Centre and Department of Pulmonology, St. Antonius Hospital, Nieuwegein, The Netherlands.
Sophie Dupuis-GirodVASCERN HHT European Reference Centre and Hospices Civils de Lyon, HHT National Reference Center and Genetic Department, Hôpital Femme-Mère-Enfants, Bron, France.
Elisabetta BuscariniVASCERN HHT European Reference Centre and Department of Gastroenterology, ASST Ospedale Maggiore Crema, Crema, Italy.

Funding

European Union 101085076
6 · The paper itself

Abstract

backgroundHereditary hemorrhagic telangiectasia (HHT) can influence the quality of life and social relationships, mostly due to epistaxis, but the topics of family planning, sexual activity and contraception have not been investigated to date. This study aimed to gain more insight: what is the influence of HHT on family planning, sexual activity and contraception?

methodsThis multi-language European survey study included a patient's and partners' version of a questionnaire designed specifically for this study. HHT patients were informed about the study through HHT expert centres, social media and websites of patient associations. Data collection took place between March- May 2023.

resultsThe survey was completed by 572 patients with a definite HHT diagnosis, based on genetic confirmation or ≥ 3 Curaçao criteria. In most patients, HHT did not affect relationship decisions (n = 353, 62%), decisions concerning pregnancy and children (n = 287, 50%) and sexual activity (n = 315, 57%). However, 28% of HHT patients (n = 157) did experience effect on sexual activity and may benefit from improved epistaxis management and better awareness of their partners.

conclusionsHHT did not affect family planning decisions and sexual activity in most patients, but approximately a quarter of patients experienced effect on sexual activity caused by epistaxis.

Indexed as

ContraceptionFamily Planning ServicesSexual BehaviorTelangiectasia, Hereditary HemorrhagicAdolescentAdultEpistaxisEuropeFemaleHumansMaleMiddle AgedSurveys and QuestionnairesYoung AdultContraceptionFamily planningHereditary hemorrhagic telangiectasiaIntimacyQuestionnaireSexual activity

Identifiers

PMID40751163
PMCPMC12317622

What OpenQuestion holds

Textmetadata
LicenceCC BY
Read underepoch 390

Registered trials

None linked

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 OpenQuestion graph.