{"status":"ok","message-type":"work","message-version":"1.0.0","message":{"indexed":{"date-parts":[[2026,7,31]],"date-time":"2026-07-31T20:10:45Z","timestamp":1785528645058,"version":"3.56.0"},"reference-count":41,"publisher":"Elsevier BV","issue":"1","license":[{"start":{"date-parts":[[2022,1,1]],"date-time":"2022-01-01T00:00:00Z","timestamp":1640995200000},"content-version":"tdm","delay-in-days":0,"URL":"https:\/\/www.elsevier.com\/tdm\/userlicense\/1.0\/"},{"start":{"date-parts":[[2022,1,1]],"date-time":"2022-01-01T00:00:00Z","timestamp":1640995200000},"content-version":"tdm","delay-in-days":0,"URL":"https:\/\/www.elsevier.com\/legal\/tdmrep-license"},{"start":{"date-parts":[[2022,12,6]],"date-time":"2022-12-06T00:00:00Z","timestamp":1670284800000},"content-version":"vor","delay-in-days":339,"URL":"http:\/\/creativecommons.org\/licenses\/by-nc-nd\/4.0\/"}],"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":["rpthjournal.org","elsevier.com","sciencedirect.com"],"crossmark-restriction":true},"short-container-title":["Research and Practice in Thrombosis and Haemostasis"],"published-print":{"date-parts":[[2022,1]]},"DOI":"10.1002\/rth2.12652","type":"journal-article","created":{"date-parts":[[2022,2,3]],"date-time":"2022-02-03T22:19:44Z","timestamp":1643926784000},"page":"e12652","update-policy":"https:\/\/doi.org\/10.1016\/elsevier_cm_policy","source":"Crossref","is-referenced-by-count":37,"title":["The lived experience of women with a bleeding disorder: A\u00a0systematic review"],"prefix":"10.1016","volume":"6","author":[{"ORCID":"https:\/\/orcid.org\/0000-0001-7993-9501","authenticated-orcid":false,"given":"Anna","family":"Sanigorska","sequence":"first","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0000-0001-7508-5609","authenticated-orcid":false,"given":"Steve","family":"Chaplin","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0000-0002-9173-4100","authenticated-orcid":false,"given":"Mike","family":"Holland","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0000-0003-2001-5958","authenticated-orcid":false,"given":"Kate","family":"Khair","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0000-0002-7797-3500","authenticated-orcid":false,"given":"Debra","family":"Pollard","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]}],"member":"78","reference":[{"key":"10.1002\/rth2.12652_bb0010","unstructured":"UK Haemophilia Centres Doctors Organisation. UKHCDO Annual Report 2019. October 2019."},{"issue":"21","key":"10.1002\/rth2.12652_bb0015","doi-asserted-by":"crossref","first-page":"2067","DOI":"10.1056\/NEJMra1601561","article-title":"Von Willebrand's disease","volume":"375","author":"Leebeek","year":"2016","journal-title":"N Engl J Med"},{"issue":"1","key":"10.1002\/rth2.12652_bb0020","doi-asserted-by":"crossref","first-page":"213","DOI":"10.1111\/j.1538-7836.2009.03661.x","article-title":"The prevalence of symptomatic von Willebrand disease in primary care practice","volume":"8","author":"Bowman","year":"2010","journal-title":"J Thromb Haemost"},{"key":"10.1002\/rth2.12652_bb0025","doi-asserted-by":"crossref","first-page":"593","DOI":"10.1111\/j.1365-2516.2004.00944.x","article-title":"The rare coagulation disorders\u2013review with guidelines for management from the United Kingdom Haemophilia Centre Doctors\u2019 Organisation","volume":"10","author":"Bolton\u2010Maggs","year":"2004","journal-title":"Haemophilia"},{"key":"10.1002\/rth2.12652_bb0030","doi-asserted-by":"crossref","first-page":"468","DOI":"10.1111\/hae.13722","article-title":"Barriers and challenges faced by women with congenital bleeding disorders in Europe: results of a patient survey conducted by the European Haemophilia Consortium","volume":"25","author":"Noone","year":"2019","journal-title":"Haemophilia"},{"issue":"suppl 1","key":"10.1002\/rth2.12652_bb0035","doi-asserted-by":"crossref","first-page":"33","DOI":"10.1111\/j.1365-2516.2011.02563.x","article-title":"Quality of life in women with bleeding disorders","volume":"17","author":"Von Mackensen","year":"2011","journal-title":"Haemophilia"},{"issue":"1","key":"10.1002\/rth2.12652_bb0040","doi-asserted-by":"crossref","first-page":"52","DOI":"10.1182\/blood-2005-09-3879","article-title":"Bleeding in carriers of hemophilia","volume":"108","author":"Plug","year":"2006","journal-title":"Blood"},{"issue":"suppl 1","key":"10.1002\/rth2.12652_bb0045","doi-asserted-by":"crossref","first-page":"236","DOI":"10.1111\/j.1538-7836.2011.04372.x","article-title":"Gynecological and obstetrical manifestations of inherited bleeding disorders in women","volume":"9","author":"Peyvandi","year":"2011","journal-title":"J Thromb Haemost"},{"issue":"7","key":"10.1002\/rth2.12652_bb0050","doi-asserted-by":"crossref","first-page":"452","DOI":"10.1097\/MBC.0000000000000945","article-title":"Postpartum bleeding in women with inherited bleeding disorders: a matched cohort study","volume":"31","author":"Wolf","year":"2020","journal-title":"Blood Coagul Fibrinolysis"},{"issue":"1","key":"10.1002\/rth2.12652_bb0055","doi-asserted-by":"crossref","first-page":"40","DOI":"10.1046\/j.1365-2516.1999.00285.x","article-title":"Assessment of menstrual blood loss and gynaecological problems in patients with inherited bleeding disorders","volume":"5","author":"Kadir","year":"1999","journal-title":"Haemophilia"},{"issue":"11","key":"10.1002\/rth2.12652_bb0060","doi-asserted-by":"crossref","first-page":"885","DOI":"10.1160\/TH11-03-0180","article-title":"Gynaecological and obstetric bleeding in moderate and severe von Willebrand disease","volume":"106","author":"de Wee","year":"2011","journal-title":"Thromb Haemost"},{"issue":"12","key":"10.1002\/rth2.12652_bb0065","doi-asserted-by":"crossref","first-page":"2763","DOI":"10.1007\/s00277-020-04250-9","article-title":"Treatment patterns and bleeding outcomes in persons with severe hemophilia A and B in a real\u2010world setting","volume":"99","author":"Ay","year":"2020","journal-title":"Ann Hematol"},{"key":"10.1002\/rth2.12652_bb0070","doi-asserted-by":"crossref","first-page":"424","DOI":"10.1111\/hae.13684","article-title":"The impact of psychosocial determinants on caregivers\u2019 burden of children with haemophilia (results of the BBC study)","volume":"25","author":"von Mackensen","year":"2019","journal-title":"Haemophilia"},{"issue":"3","key":"10.1002\/rth2.12652_bb0075","doi-asserted-by":"crossref","first-page":"385","DOI":"10.1111\/hae.12014","article-title":"Bleeding disorders, menorrhagia and iron deficiency: impacts on health\u2010related quality of life","volume":"19","author":"Rae","year":"2013","journal-title":"Haemophilia"},{"issue":"12","key":"10.1002\/rth2.12652_bb0080","doi-asserted-by":"crossref","first-page":"3211","DOI":"10.1111\/jth.15102","article-title":"Everything was blood when it comes to me\u201d: understanding the lived experiences of women with inherited bleeding disorders","volume":"18","author":"Arya","year":"2020","journal-title":"J Thromb Haemost"},{"key":"10.1002\/rth2.12652_bb0085","doi-asserted-by":"crossref","first-page":"210","DOI":"10.1186\/s13643-016-0384-4","article-title":"Rayyan \u2014 a web and mobile app for systematic reviews","volume":"5","author":"Ouzzani","year":"2016","journal-title":"Syst Rev"},{"issue":"2","key":"10.1002\/rth2.12652_bb0090","doi-asserted-by":"crossref","DOI":"10.1371\/journal.pone.0229099","article-title":"Healthcare provider perspectives on inequities in access to care for patients with inherited bleeding disorders","volume":"15","author":"Arya","year":"2020","journal-title":"PLoS One"},{"key":"10.1002\/rth2.12652_bb0095","unstructured":"Atiq F, Saes JL, Meijer K, et al. Important sex differences in patients with autosomal inherited bleeding disorders. ISTH 2020 Congress. Abstract Number: PB1202 https:\/\/abstracts.isth.org\/abstract\/important\u2010sex\u2010differences\u2010in\u2010patients\u2010with\u2010autosomal\u2010inherited\u2010bleeding\u2010disorders\/"},{"key":"10.1002\/rth2.12652_bb0100","unstructured":"Badagabettu S, Kurien A, Noronha A, et al. Psycho\u2010social status and coping strategies among women carrier for hemophilia \u2010 A Descriptive Study from India. International Society on Thrombosis and Haemostasis Congress. Melbourne, July 2019. Oral abstracts. NUR 01.2."},{"key":"10.1002\/rth2.12652_bb0105","doi-asserted-by":"crossref","first-page":"108","DOI":"10.1002\/ajh.10327","article-title":"Health status and health\u2010related quality of life associated with von Willebrand disease","volume":"73","author":"Barr","year":"2003","journal-title":"Am J Hematol"},{"key":"10.1002\/rth2.12652_bb0110","doi-asserted-by":"crossref","first-page":"100","DOI":"10.1002\/rth2.12281","article-title":"Congenital platelet disorders and health status\u2010related quality of life","volume":"4","author":"Blaauwgeers","year":"2019","journal-title":"Res Pract Thromb Haemost"},{"key":"10.1002\/rth2.12652_bb0115","unstructured":"Borel Derlon A, Goudemand J, Deprez D, et al. WISH\u2010QoL Study: assessment of health\u2010related quality of life and health\u2010economic aspects in patients with von Willebrand disease in France: results from the 2nd interim analysis on the 355 enrolled patients ISTH virtual congress 2020. Abstract PB1553"},{"key":"10.1002\/rth2.12652_bb0120","doi-asserted-by":"crossref","first-page":"592","DOI":"10.1111\/ejh.13055","article-title":"Impact of hemophilia B on quality of life in affected men, women, and caregivers\u2014assessment of patient\u2010reported outcomes in the B\u2010HERO\u2010S study","volume":"100","author":"Buckner","year":"2018","journal-title":"Eur J Haematol"},{"issue":"suppl 86","key":"10.1002\/rth2.12652_bb0125","doi-asserted-by":"crossref","first-page":"5","DOI":"10.1111\/ejh.12854","article-title":"Management of US men, women, and children with hemophilia and methods and demographics of the Bridging Hemophilia B Experiences, Results and Opportunities into Solutions (B\u2010HERO\u2010S) study","volume":"98","author":"Buckner","year":"2017","journal-title":"Eur J Haematol"},{"key":"10.1002\/rth2.12652_bb0130","doi-asserted-by":"crossref","first-page":"215","DOI":"10.1016\/j.jpag.2009.11.008","article-title":"Menorrhagia in adolescents with inherited bleeding disorders","volume":"23","author":"Chi","year":"2010","journal-title":"J Pediatr Adolesc Gynecol"},{"key":"10.1002\/rth2.12652_bb0135","doi-asserted-by":"crossref","first-page":"1923","DOI":"10.3892\/etm.2016.3144","article-title":"Heavy menstrual bleeding and health\u2010associated quality of life in women with von Willebrand\u2019s disease","volume":"11","author":"Govorov","year":"2016","journal-title":"Exp Ther Med"},{"key":"10.1002\/rth2.12652_bb0140","doi-asserted-by":"crossref","first-page":"1041","DOI":"10.1080\/01443615.2016.1196168","article-title":"Haemostatic disorders in reproductive age women with menorrhagia and effects on quality of life","volume":"36","author":"Hacioglu","year":"2016","journal-title":"J Obstet Gynaecol"},{"key":"10.1002\/rth2.12652_bb0145","doi-asserted-by":"crossref","first-page":"836","DOI":"10.1046\/j.1365-2516.1998.00208.x","article-title":"Quality of life during menstruation in patients with inherited bleeding disorders","volume":"4","author":"Kadir","year":"1998","journal-title":"Haemophilia"},{"key":"10.1002\/rth2.12652_bb0150","doi-asserted-by":"crossref","first-page":"33","DOI":"10.1046\/j.1365-2516.2000.00353.x","article-title":"Reproductive choices of women in families with haemophilia","volume":"6","author":"Kadir","year":"2000","journal-title":"Haemophilia"},{"key":"10.1002\/rth2.12652_bb0155","doi-asserted-by":"crossref","first-page":"e276","DOI":"10.1111\/hae.12155","article-title":"The experience of girls and young women with inherited bleeding disorders","volume":"19","author":"Khair","year":"2013","journal-title":"Haemophilia"},{"key":"10.1002\/rth2.12652_bb0160","doi-asserted-by":"crossref","first-page":"292","DOI":"10.1046\/j.1365-2516.2003.00756.x","article-title":"Medical, reproductive and psychosocial experiences of women diagnosed with von Willebrand\u2019s disease receiving care in haemophilia treatment centres: a case\u2010control study","volume":"9","author":"Kirtava","year":"2003","journal-title":"Haemophilia"},{"key":"10.1002\/rth2.12652_bb0165","doi-asserted-by":"crossref","first-page":"643","DOI":"10.1046\/j.1365-2516.2000.00447.x","article-title":"Gynaecological and obstetrical morbidity in women with type I von Willebrand disease: results of a patient survey","volume":"6","author":"Kouides","year":"2000","journal-title":"Haemophilia"},{"key":"10.1002\/rth2.12652_bb0170","doi-asserted-by":"crossref","first-page":"248","DOI":"10.1111\/j.1365-2516.2006.01219.x","article-title":"Disorders of menstruation and their effect on the quality of life in women with congenital factor VII deficiency","volume":"12","author":"Kulkarni","year":"2006","journal-title":"Haemophilia"},{"key":"10.1002\/rth2.12652_bb0175","doi-asserted-by":"crossref","first-page":"67","DOI":"10.1186\/s12955-017-0643-7","article-title":"Predictors of quality of life among adolescents and young adults with a bleeding disorder","volume":"15","author":"McLaughlin","year":"2017","journal-title":"Health Qual Life Outcomes"},{"key":"10.1002\/rth2.12652_bb0180","doi-asserted-by":"crossref","first-page":"96","DOI":"10.1016\/j.bcmd.2016.11.010","article-title":"Health\u2010related quality of life in children, adolescents and adults with hereditary and acquired bleeding disorders","volume":"67","author":"Nowak\u2010G\u00f6ttl","year":"2017","journal-title":"Blood Cells Mol Dis"},{"key":"10.1002\/rth2.12652_bb0185","doi-asserted-by":"crossref","first-page":"742","DOI":"10.1111\/hae.12796","article-title":"Association between bleeding tendency and health\u2010related quality of life in carriers of moderate and severe haemophilia","volume":"21","author":"Olsson","year":"2015","journal-title":"Haemophilia"},{"key":"10.1002\/rth2.12652_bb0190","unstructured":"Pastori MS, Stefanelli A, Siqueira LH, et al. Clinical and laboratory evaluation of female carriers of hemophilia. ISTH 2019 poster abstracts. PB0695."},{"key":"10.1002\/rth2.12652_bb0195","doi-asserted-by":"crossref","first-page":"237","DOI":"10.1111\/j.1365-2516.2010.02424.x","article-title":"Qualitative assessment of the emotional and behavioural responses of haemophilia A carriers to negative experiences in their medical care","volume":"17","author":"Renault","year":"2011","journal-title":"Haemophilia"},{"key":"10.1002\/rth2.12652_bb0200","doi-asserted-by":"crossref","first-page":"1324","DOI":"10.1007\/s10897-017-0112-9","article-title":"It was a lot tougher than I thought it would be.\u201d A qualitative study on the changing nature of being a hemophilia carrier","volume":"26","author":"von der Lippe","year":"2017","journal-title":"J Genet Couns"},{"key":"10.1002\/rth2.12652_bb0205","doi-asserted-by":"crossref","first-page":"115","DOI":"10.1111\/hae.13062","article-title":"Relative contributions of bleeding scores and iron status on health\u2010related quality of life in von Willebrand disease: a cross\u2010sectional study","volume":"23","author":"Xu","year":"2017","journal-title":"Haemophilia"},{"issue":"1","key":"10.1002\/rth2.12652_bb0210","doi-asserted-by":"crossref","first-page":"51","DOI":"10.1002\/rth2.12468","article-title":"Sexism in the management of bleeding disorders","volume":"5","author":"Weyland","year":"2021","journal-title":"Res Pract Thromb Haemost"}],"container-title":["Research and Practice in Thrombosis and Haemostasis"],"original-title":[],"language":"en","link":[{"URL":"https:\/\/onlinelibrary.wiley.com\/doi\/pdf\/10.1002\/rth2.12652","content-type":"application\/pdf","content-version":"vor","intended-application":"text-mining"},{"URL":"https:\/\/onlinelibrary.wiley.com\/doi\/full-xml\/10.1002\/rth2.12652","content-type":"application\/xml","content-version":"vor","intended-application":"text-mining"},{"URL":"https:\/\/api.elsevier.com\/content\/article\/PII:S2475037922011141?httpAccept=text\/xml","content-type":"text\/xml","content-version":"vor","intended-application":"text-mining"},{"URL":"https:\/\/api.elsevier.com\/content\/article\/PII:S2475037922011141?httpAccept=text\/plain","content-type":"text\/plain","content-version":"vor","intended-application":"text-mining"},{"URL":"https:\/\/onlinelibrary.wiley.com\/doi\/pdf\/10.1002\/rth2.12652","content-type":"unspecified","content-version":"vor","intended-application":"similarity-checking"}],"deposited":{"date-parts":[[2025,11,11]],"date-time":"2025-11-11T12:22:29Z","timestamp":1762863749000},"score":1,"resource":{"primary":{"URL":"https:\/\/linkinghub.elsevier.com\/retrieve\/pii\/S2475037922011141"}},"subtitle":[],"short-title":[],"issued":{"date-parts":[[2022,1]]},"references-count":41,"journal-issue":{"issue":"1","published-print":{"date-parts":[[2022,1]]}},"alternative-id":["S2475037922011141"],"URL":"https:\/\/doi.org\/10.1002\/rth2.12652","relation":{},"ISSN":["2475-0379"],"issn-type":[{"value":"2475-0379","type":"print"}],"subject":[],"published":{"date-parts":[[2022,1]]},"assertion":[{"value":"Elsevier","name":"publisher","label":"This article is maintained by"},{"value":"The lived experience of women with a bleeding disorder: A\u00a0systematic review","name":"articletitle","label":"Article Title"},{"value":"Research and Practice in Thrombosis and Haemostasis","name":"journaltitle","label":"Journal Title"},{"value":"https:\/\/doi.org\/10.1002\/rth2.12652","name":"articlelink","label":"CrossRef DOI link to publisher maintained version"},{"value":"article","name":"content_type","label":"Content Type"},{"value":"Copyright \u00a9 2022 The Authors. Research and Practice in Thrombosis and Haemostasis published by ELSEVIER INC. on behalf of International Society on Thrombosis and Haemostasis","name":"copyright","label":"Copyright"}],"article-number":"e12652"}}