Sexuality and bleeding in von Willebrand disease

IF 3.4 3区医学 Q2 HEMATOLOGY

Research and Practice in Thrombosis and Haemostasis Pub Date : 2025-02-01 DOI:10.1016/j.rpth.2025.102712

Calvin B. van Kwawegen , Hester Pastoor , Jeroen Eikenboom , Karin Fijnvandraat , Paula Ypma , Floor C.J.I. Heubel-Moenen , Karin P.M. van Galen , Evelien P. Mauser-Bunschoten , Karina Meijer , Saskia E.M. Schols , Marjon H. Cnossen , Johanna G. van der Bom , Joke de Meris , Ferdows Atiq , Marieke J.H.A. Kruip , Frank W.G. Leebeek

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Abstract

Background

Sexuality is a fundamental aspect of quality of life, often impacted by chronic or inherited diseases like von Willebrand disease (VWD), an inherited bleeding disorder characterized by mucosal bleeding, including heavy menstrual bleeding (HMB). To date, no studies have investigated the impact of VWD on sexuality.

Objectives

This study aimed to identify sexual restrictions and symptoms in VWD patients, differentiating between men and women and between premenopausal and nonmenstruating women.

Methods

We performed a nationwide, multicenter, prospective cohort study, the Willebrand in the Netherlands-Prospective study, including adult VWD patients (>18 years) who completed questionnaires on sexuality and health-related quality of life (SF-36). Additional data were collected via blood tests and a self-reported bleeding assessment tool (International Society on Thrombosis and Haemostasis Bleeding Assessment Tool).

Results

We included 549 VWD patients with a median age of 51 years (IQR, 37-66 years), of whom the majority were women (n = 347; 63.2%). Patients were diagnosed with type 1 (57.2%), type 2 (39.2%), or type 3 VWD (3.6%). Sexual restrictions due to VWD were reported by 3.5% of men (n = 7) and 9.8% of women (n = 34; P < .01). Bleeding during sexual activity was reported by 33.1% (n = 115) of women. Premenopausal patients more often reported sexual restrictions than nonmenstruating patients (15.5% vs 5.2%, P = .01), with HMB as the most important determinant (odds ratio, 1.60; 95% CI, 1.12-2.46). Most patients (n = 455; 82.9%) reported that sexuality was not discussed during routine clinic visits.

Conclusion

Women with VWD experience more sexual restrictions than men and report more postcoital bleeding than the general population. Premenopausal women are particularly affected, mostly due to HMB. This highlights the need for health care providers to address sexual health during consultations and treat HMB to improve overall care for VWD patients.

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血管性血友病的性与出血

性行为是生活质量的一个基本方面，经常受到慢性或遗传性疾病的影响，如血管性血友病（VWD），一种以粘膜出血为特征的遗传性出血疾病，包括大量月经出血（HMB）。到目前为止，还没有研究调查过VWD对性行为的影响。目的本研究旨在鉴别VWD患者的性限制和症状，区分男性和女性以及绝经前和非经期女性。方法：我们进行了一项全国性、多中心、前瞻性队列研究，荷兰Willebrand前瞻性研究，包括成年VWD患者（18岁），他们完成了性行为和健康相关生活质量问卷（SF-36）。通过血液检查和自我报告的出血评估工具（国际血栓和止血学会出血评估工具）收集其他数据。结果纳入549例VWD患者，中位年龄51岁（IQR， 37-66岁），其中多数为女性(n = 347；63.2%)。患者被诊断为1型（57.2%）、2型（39.2%）或3型VWD（3.6%）。3.5%的男性（n = 7）和9.8%的女性（n = 34）报告了因VWD引起的性限制；P & lt;. 01)。33.1% （n = 115）的女性报告在性行为中出血。绝经前患者比非经期患者更常报告性限制（15.5% vs 5.2%, P = 0.01）， HMB是最重要的决定因素(优势比，1.60；95% ci, 1.12-2.46)。大多数患者(n = 455；82.9%)报告在常规门诊就诊时没有讨论性问题。结论女性VWD患者性生活受限程度高于男性，性后出血发生率高于普通人群。绝经前妇女尤其受影响，主要是由于HMB。这突出了卫生保健提供者需要在咨询和治疗HMB期间解决性健康问题，以改善对VWD患者的整体护理。

本文章由计算机程序翻译，如有差异，请以英文原文为准。

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