{"status":"ok","message-type":"work","message-version":"1.0.0","message":{"indexed":{"date-parts":[[2026,9,28]],"date-time":"2026-09-28T04:54:58Z","timestamp":1790571298863,"version":"4.1.0"},"reference-count":60,"publisher":"Wiley","issue":"1","license":[{"start":{"date-parts":[[2025,11,19]],"date-time":"2025-11-19T00:00:00Z","timestamp":1763510400000},"content-version":"vor","delay-in-days":0,"URL":"http:\/\/onlinelibrary.wiley.com\/termsAndConditions#vor"},{"start":{"date-parts":[[2025,11,19]],"date-time":"2025-11-19T00:00:00Z","timestamp":1763510400000},"content-version":"tdm","delay-in-days":0,"URL":"http:\/\/doi.wiley.com\/10.1002\/tdm_license_1.1"}],"funder":[{"DOI":"10.13039\/100008322","name":"CSL Behring","doi-asserted-by":"publisher","id":[{"id":"10.13039\/100008322","id-type":"DOI","asserted-by":"publisher"}]}],"content-domain":{"domain":["onlinelibrary.wiley.com"],"crossmark-restriction":true},"short-container-title":["Haemophilia"],"published-print":{"date-parts":[[2026,1]]},"abstract":"<jats:title>ABSTRACT<\/jats:title>\n                  <jats:sec>\n                    <jats:title>Introduction<\/jats:title>\n                    <jats:p>Von Willebrand disease (VWD) is one of the most common hereditary disorders of primary haemostasis. Females with VWD often report heavy menstrual bleeding (HMB) that can significantly impact health\u2010related quality of life (HRQoL).<\/jats:p>\n                  <\/jats:sec>\n                  <jats:sec>\n                    <jats:title>Aim<\/jats:title>\n                    <jats:p>To analyse clinical and HRQoL data of females with VWD from the WIL\u2010QoL study.<\/jats:p>\n                  <\/jats:sec>\n                  <jats:sec>\n                    <jats:title>Methods<\/jats:title>\n                    <jats:p>Clinical and obstetric\u2010gynaecological data were collected by a physician\u2010led clinical questionnaire and HRQoL data via a patient\u2010reported VWD\u2010specific questionnaire (VWD\u2010QoL).<\/jats:p>\n                  <\/jats:sec>\n                  <jats:sec>\n                    <jats:title>Results<\/jats:title>\n                    <jats:p>\n                      Data on menstruation were available from 113 females with VWD (15 post\u2010menarche girls [mean age 14.8\u00a0\u00b1\u00a01.7\u00a0years] and 98 women [mean age 37.8\u00a0\u00b1\u00a012.6\u00a0years]). HMB (defined as increased [simultaneous use\/replacement of sanitary pads\/tampons every 1\u20132\u00a0h] and\/or prolonged [&gt;7 days] menstrual bleeding) was reported in 85% and 77% of girls and women, respectively. Of 72 women who became pregnant, 31 experienced bleeding during pregnancy (3 women had missing data) and 32 women reported at least one miscarriage (44%). Overall, 12\/96 women (13%) underwent hysterectomy due to bleeding; these women had more moderate\u2010to\u2010severe VWD (\n                      <jats:italic>p\u00a0<\/jats:italic>\n                      &lt;\u00a0.006) and a higher bleeding score (\n                      <jats:italic>p<\/jats:italic>\n                      \u00a0&lt;\u00a0.013) than women who did not undergo hysterectomy. Women still experiencing menstruation (\n                      <jats:italic>n<\/jats:italic>\n                      \u00a0=\u00a071) who \u2018often\/all the time\u2019 self\u2010reported HMB (HMB\u2010PRO), pain during menstruation and impairments in everyday\u2010life activities due to menstruation had significantly worse HRQoL compared with those who \u2018never\/rarely\u2019 reported these impacts (\n                      <jats:italic>p<\/jats:italic>\n                      \u00a0=\u00a0.004,\n                      <jats:italic>p<\/jats:italic>\n                      \u00a0&lt;\u00a0.001 and\n                      <jats:italic>p\u00a0<\/jats:italic>\n                      &lt;\u00a0.001, respectively). Women who underwent hysterectomy reported significantly worse HRQoL than those who did not (\n                      <jats:italic>p<\/jats:italic>\n                      \u00a0&lt;\u00a0.007).\n                    <\/jats:p>\n                  <\/jats:sec>\n                  <jats:sec>\n                    <jats:title>Conclusion<\/jats:title>\n                    <jats:p>Female VWD patients experienced substantial disease and HRQoL burden that is further exacerbated by HMB.<\/jats:p>\n                  <\/jats:sec>","DOI":"10.1111\/hae.70125","type":"journal-article","created":{"date-parts":[[2025,11,19]],"date-time":"2025-11-19T18:15:28Z","timestamp":1763576128000},"page":"174-184","update-policy":"https:\/\/doi.org\/10.1002\/crossmark_policy","source":"Crossref","is-referenced-by-count":0,"title":["Clinical, Obstetric\u2010Gynaecological and HRQoL Data of Female VWD Patients in the WIL\u2010QoL Study"],"prefix":"10.1111","volume":"32","author":[{"ORCID":"https:\/\/orcid.org\/0000-0001-8596-9870","authenticated-orcid":false,"given":"Susan","family":"Halimeh","sequence":"first","affiliation":[{"name":"Coagulation Centre Rhine\u2010Ruhr  Duisburg Germany"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Cornelia","family":"Wermes","sequence":"additional","affiliation":[{"name":"Department of Paediatric Haematology and Oncology Hanover Medical School  Hanover Germany"},{"name":"Haemophilia Centres Hildesheim\u2010Hanover\u2010Osnabr\u00fcck  Hanover Germany"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0000-0002-4925-2626","authenticated-orcid":false,"given":"Carolin","family":"Moorthi","sequence":"additional","affiliation":[{"name":"Coagulation Centre, Bremen Central Clinic, GeNo Ltd Parent\u2010Child\u2010Centre Prof. Hess  Bremen Germany"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0000-0002-3055-3955","authenticated-orcid":false,"given":"Ronald","family":"Fischer","sequence":"additional","affiliation":[{"name":"Haemophilia Centre University Hospital Giessen\/Marburg  Giessen Germany"},{"name":"SRH Haemophilia Treatment Centre SRH Kurpfalz\u2010hospital Heidelberg  Heidelberg Germany"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Christine","family":"Heller","sequence":"additional","affiliation":[{"name":"Department of Paediatrics Paediatric Haemophilia Centre Goethe University University Hospital Frankfurt  Frankfurt\/Main Germany"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0000-0002-4506-0061","authenticated-orcid":false,"given":"Wolfgang","family":"Miesbach","sequence":"additional","affiliation":[{"name":"Medical Clinic II Institute of Transfusion Medicine Goethe University University Hospital Frankfurt  Frankfurt\/Main Germany"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0000-0001-8681-2760","authenticated-orcid":false,"given":"Freimut H.","family":"Schilling","sequence":"additional","affiliation":[{"name":"Children's Hospital Olgahospital  Stuttgart Germany"},{"name":"Children's Hospital of Central Switzerland  Lucerne Switzerland"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0000-0003-3517-7052","authenticated-orcid":false,"given":"Guenter","family":"Auerswald","sequence":"additional","affiliation":[{"name":"Coagulation Centre, Bremen Central Clinic, GeNo Ltd Parent\u2010Child\u2010Centre Prof. Hess  Bremen Germany"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0000-0002-5926-0478","authenticated-orcid":false,"given":"Sylvia","family":"von Mackensen","sequence":"additional","affiliation":[{"name":"Department of Medical Psychology University Medical Centre of 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