Sexuality and bleeding in von Willebrand disease
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 i...
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2025-02-01
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| author | 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 K. Fijnvandraat M. Coppens J. de Meris K. Meijer R.Y.J. Tamminga P.F. Ypma H.C.J. Eikenboom J.G. van der Bom F.J.W. Smiers F.C.J.I. Heubel-Moenen A. van der Veer S.E.M. Schols F.W.G. Leebeek M.H. Cnossen F. Atiq C.B. van Kwawegen E.P. Mauser-Bunschoten K.P.M. van Galen |
| author_facet | 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 K. Fijnvandraat M. Coppens J. de Meris K. Meijer R.Y.J. Tamminga P.F. Ypma H.C.J. Eikenboom J.G. van der Bom F.J.W. Smiers F.C.J.I. Heubel-Moenen A. van der Veer S.E.M. Schols F.W.G. Leebeek M.H. Cnossen F. Atiq C.B. van Kwawegen E.P. Mauser-Bunschoten K.P.M. van Galen |
| author_sort | Calvin B. van Kwawegen |
| collection | DOAJ |
| description | 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. |
| format | Article |
| id | doaj-art-e8ba6fcbbfd947bfa79edf0bc02287ad |
| institution | OA Journals |
| issn | 2475-0379 |
| language | English |
| publishDate | 2025-02-01 |
| publisher | Elsevier |
| record_format | Article |
| series | Research and Practice in Thrombosis and Haemostasis |
| spelling | doaj-art-e8ba6fcbbfd947bfa79edf0bc02287ad2025-08-20T02:18:23ZengElsevierResearch and Practice in Thrombosis and Haemostasis2475-03792025-02-019210271210.1016/j.rpth.2025.102712Sexuality and bleeding in von Willebrand diseaseCalvin B. van Kwawegen0Hester Pastoor1Jeroen Eikenboom2Karin Fijnvandraat3Paula Ypma4Floor C.J.I. Heubel-Moenen5Karin P.M. van Galen6Evelien P. Mauser-Bunschoten7Karina Meijer8Saskia E.M. Schols9Marjon H. Cnossen10Johanna G. van der Bom11Joke de Meris12Ferdows Atiq13Marieke J.H.A. Kruip14Frank W.G. Leebeek15K. Fijnvandraat16M. Coppens17J. de Meris18K. Meijer19R.Y.J. Tamminga20P.F. Ypma21H.C.J. Eikenboom22J.G. van der Bom23F.J.W. Smiers24F.C.J.I. Heubel-Moenen25A. van der Veer26S.E.M. Schols27F.W.G. Leebeek28M.H. Cnossen29F. Atiq30C.B. van Kwawegen31E.P. Mauser-Bunschoten32K.P.M. van Galen33Department of Hematology, Erasmus Medical Center, University Medical Center, Rotterdam, the NetherlandsDivision of Reproductive Medicine, Department of Obstetrics and Gynecology, Erasmus University Medical Center, Rotterdam, the NetherlandsDepartment of Internal Medicine, Division of Thrombosis and Hemostasis, Leiden University Medical Centre, Leiden, the NetherlandsDepartment of Pediatric Hematology, Amsterdam University Medical Center, University of Amsterdam, Amsterdam, the NetherlandsDepartment of Hematology, Hagaziekenhuis, Den Haag, the NetherlandsDepartment of Hematology, Maastricht University Medical Center, Hemophilia Treatment Centre Nijmegen-Eindhoven-Maastricht, Maastricht, the NetherlandsDepartment of Benign Haematology, Thrombosis and Haemostasis, Van Creveldkliniek, University Medical Center Utrecht, Utrecht University, Utrecht, the NetherlandsDepartment of Benign Haematology, Thrombosis and Haemostasis, Van Creveldkliniek, University Medical Center Utrecht, Utrecht University, Utrecht, the NetherlandsDepartment Hematology, University Medical Center Groningen, Groningen, the NetherlandsDepartment of Hematology, Radboud University Medical Center, Hemophilia Treatment Center Nijmegen-Eindhoven-Maastricht, Nijmegen, the NetherlandsDepartment of Pediatric Hematology and Oncology, Erasmus Medical Center, Sophia Children’s Hospital, University Medical Center Rotterdam, Rotterdam, the NetherlandsDepartment of Clinical Epidemiology, Leiden University Medical Center, Leiden, the NetherlandsNetherlands Hemophilia Society, Nijkerk, the NetherlandsDepartment of Hematology, Erasmus Medical Center, University Medical Center, Rotterdam, the NetherlandsDepartment of Hematology, Erasmus Medical Center, University Medical Center, Rotterdam, the NetherlandsDepartment of Hematology, Erasmus Medical Center, University Medical Center, Rotterdam, the Netherlands; Correspondence Frank W. G. Leebeek, Department of Hematology, Erasmus MC, University Medical Center Rotterdam, PO Box 2040, CA Rotterdam3000, the Netherlands.University Medical Centre, Amsterdam, the NetherlandsUniversity Medical Centre, Amsterdam, the NetherlandsThe Netherlands Haemophilia Society, the NetherlandsUniversity Medical Centre Groningen, Groningen, the NetherlandsUniversity Medical Centre Groningen, Groningen, the NetherlandsHagaZiekenhuis, The Hague, the NetherlandsLeiden University Medical Centre, Leiden, the NetherlandsLeiden University Medical Centre, Leiden, the NetherlandsLeiden University Medical Centre, Leiden, the NetherlandsMaastricht University Medical Centre, Maastricht, the NetherlandsMaastricht University Medical Centre, Maastricht, the NetherlandsRadboud University Medical Centre, Nijmegen, the NetherlandsErasmus University Medical Centre, Rotterdam, the NetherlandsErasmus University Medical Centre, Rotterdam, the NetherlandsErasmus University Medical Centre, Rotterdam, the NetherlandsErasmus University Medical Centre, Rotterdam, the NetherlandsVan Creveldkliniek, University Medical Centre Utrecht, Utrecht, the NetherlandsVan Creveldkliniek, University Medical Centre Utrecht, Utrecht, the NetherlandsBackground: 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.http://www.sciencedirect.com/science/article/pii/S2475037925000366hemorrhagemenorrhagiaquality of lifesexualityvon Willebrand disease |
| spellingShingle | 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 K. Fijnvandraat M. Coppens J. de Meris K. Meijer R.Y.J. Tamminga P.F. Ypma H.C.J. Eikenboom J.G. van der Bom F.J.W. Smiers F.C.J.I. Heubel-Moenen A. van der Veer S.E.M. Schols F.W.G. Leebeek M.H. Cnossen F. Atiq C.B. van Kwawegen E.P. Mauser-Bunschoten K.P.M. van Galen Sexuality and bleeding in von Willebrand disease Research and Practice in Thrombosis and Haemostasis hemorrhage menorrhagia quality of life sexuality von Willebrand disease |
| title | Sexuality and bleeding in von Willebrand disease |
| title_full | Sexuality and bleeding in von Willebrand disease |
| title_fullStr | Sexuality and bleeding in von Willebrand disease |
| title_full_unstemmed | Sexuality and bleeding in von Willebrand disease |
| title_short | Sexuality and bleeding in von Willebrand disease |
| title_sort | sexuality and bleeding in von willebrand disease |
| topic | hemorrhage menorrhagia quality of life sexuality von Willebrand disease |
| url | http://www.sciencedirect.com/science/article/pii/S2475037925000366 |
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