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Background <p>Hereditary 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?</p> Methods <p>This 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.</p> Results <p>The 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.</p> Conclusions <p>HHT 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.</p>

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

  • 期刊论文

  • 出版模式：

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  • 发表日期：

    2025年8月1日

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  • Josefien Hessels,
  • Marco C. Post,
  • Sanne Boerman,
  • Freya Droege,
  • Olivier Dupuis,
  • Claudia Crocione,
  • Christina Grabowski,
  • Ria Blom,
  • Luisa M. Botella,
  • Fernando Brocca,
  • Didier Erasme,
  • Paolo Federici,
  • Mildred Lundgren,
  • Tone Soderman,
  • Karen T. Druckman,
  • Dara Woods,
  • Urban W. Geisthoff,
  • Pernille D. Haahr,
  • Anette D. Kjeldsen,
  • Johannes-Jurgen Mager,
  • Sophie Dupuis-Girod,
  • Elisabetta Buscarini

摘要

Background

Hereditary 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?

Methods

This 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.

Results

The 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.

Conclusions

HHT 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.