{"status":"ok","message-type":"work","message-version":"1.0.0","message":{"indexed":{"date-parts":[[2026,10,10]],"date-time":"2026-10-10T02:18:10Z","timestamp":1791598690808,"version":"4.3.4"},"reference-count":34,"publisher":"Wiley","issue":"2","license":[{"start":{"date-parts":[[2003,5,9]],"date-time":"2003-05-09T00:00:00Z","timestamp":1052438400000},"content-version":"vor","delay-in-days":0,"URL":"http:\/\/onlinelibrary.wiley.com\/termsAndConditions#vor"}],"content-domain":{"domain":[],"crossmark-restriction":false},"short-container-title":["American J Hematol"],"published-print":{"date-parts":[[2003,6]]},"abstract":"<jats:title>Abstract<\/jats:title><jats:p>Von Willebrand disease (VWD) is the commonest inherited disorder of hemostasis and the majority of women with this disorder experience excessive uterine bleeding. Yet very little information is available on the health\u2010related quality of life (HRQL) in individuals with VWD. To test the a priori hypotheses that these individuals will have poorer HRQL than members of the general population, and that this burden of morbidity will correlate with the severity of VWD, a cross\u2010sectional study was undertaken of a population\u2010based cohort in a regional hemophilia program in Ontario, Canada. A survey was made of individuals over 13 years of age with VWD who self\u2010reported their health status using a standard 15 item questionnaire. The responses were converted to levels in the Health Utilities Index Mark 2 (HUI2) and Mark 3 (HUI3) health status classification systems to form multi\u2010element vectors from which single attribute morbidity and overall HRQL utility scores were determined. As a group, individuals with VWD were shown to have poorer HRQL than members of the general population and those with Type 2 disease carried a greater burden of overall morbidity than those with Type 1 disorder. Morbidity was evident mainly in the attributes of emotion, cognition with pain. A striking difference was observed between males and females, with the latter having overall HRQL utility scores similar to those reported previously for HIV positive, severe hemophiliacs. It is possible that this remarkable burden of morbidity reflects chronic iron deficiency associated with menorrhagia. A national study has been proposed to address this likelihood as it offers an opportunity for effective therapeutic intervention (iron supplementation) with a concomitant gain in health status and HRQL. Am. J. Hematol. 73:108\u2013114, 2003. \u00a9 2003 Wiley\u2010Liss, Inc.<\/jats:p>","DOI":"10.1002\/ajh.10327","type":"journal-article","created":{"date-parts":[[2003,5,12]],"date-time":"2003-05-12T11:31:15Z","timestamp":1052739075000},"page":"108-114","source":"Crossref","is-referenced-by-count":78,"title":["Health status and health\u2010related quality of life associated with von Willebrand disease"],"prefix":"10.1002","volume":"73","author":[{"given":"Ronald D.","family":"Barr","sequence":"first","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Julia","family":"Sek","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"John","family":"Horsman","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"William","family":"Furlong","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Mahassen","family":"Saleh","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Mohan","family":"Pai","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Irwin","family":"Walker","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]}],"member":"311","published-online":{"date-parts":[[2003,5,9]]},"reference":[{"key":"e_1_2_1_2_2","doi-asserted-by":"publisher","DOI":"10.1055\/s-0037-1613992"},{"key":"e_1_2_1_3_2","first-page":"19","article-title":"Hemophilia and von Willebrand's disease. 1. Diagnosis, comprehensive care and assessment","volume":"153","author":"Association of Hemophilia Clinic Directors of Canada","year":"1995","journal-title":"Can Med Assoc J"},{"key":"e_1_2_1_4_2","doi-asserted-by":"publisher","DOI":"10.1182\/blood.V97.7.1915"},{"key":"e_1_2_1_5_2","doi-asserted-by":"publisher","DOI":"10.1046\/j.1365-2516.1998.00208.x"},{"key":"e_1_2_1_6_2","doi-asserted-by":"publisher","DOI":"10.1046\/j.1365-2516.2000.00447.x"},{"key":"e_1_2_1_7_2","doi-asserted-by":"publisher","DOI":"10.1046\/j.1365-2516.1999.00342.x"},{"key":"e_1_2_1_8_2","doi-asserted-by":"crossref","first-page":"784","DOI":"10.1055\/s-0038-1649813","article-title":"The reproductive health of women with von Willebrand disease unresponsive to DDAVP. Results of an international survey. On behalf of the Subcommittee on von Willebrand Factor of the Scientific and Standarisation Committee of the ISTH","volume":"74","author":"Foster PA","year":"1995","journal-title":"Thromb Haemost"},{"issue":"1","key":"e_1_2_1_9_2","first-page":"14","article-title":"Bleeding problems in women","volume":"108","author":"Lee CA","year":"2000","journal-title":"Br J Haematol"},{"issue":"1","key":"e_1_2_1_10_2","first-page":"14","article-title":"The investigation and management of women with menorrhagia","volume":"108","author":"Seremetis S","year":"2000","journal-title":"Br J Haematol"},{"issue":"1","key":"e_1_2_1_11_2","first-page":"15","article-title":"Bleeding disorders and pregnancy","volume":"108","author":"Kadir RA","year":"2000","journal-title":"Br J Haematol"},{"issue":"1","key":"e_1_2_1_12_2","first-page":"55","article-title":"von Willebrand's disease in patients presenting with menorrhagia","volume":"108","author":"White B","year":"2000","journal-title":"Br J Haematol"},{"key":"e_1_2_1_13_2","doi-asserted-by":"publisher","DOI":"10.1002\/(SICI)1096-8652(199612)53:4<234::AID-AJH4>3.0.CO;2-Z"},{"key":"e_1_2_1_14_2","doi-asserted-by":"publisher","DOI":"10.1016\/S0140-6736(97)08248-2"},{"key":"e_1_2_1_15_2","doi-asserted-by":"publisher","DOI":"10.1002\/ajh.10191"},{"key":"e_1_2_1_16_2","volume-title":"Health Utilities Index (HUI\u00ae) procedures manual: algorithm for determining HUI Mark 2(HUI2)\/Mark 3 (HUI3) health status classification levels, health states, single\u2010attribute level utility scores and overall health\u2010related quality of life utility scores, from 15\u2010item self\u2010complete health status questionnaires","author":"Furlong W","year":"2000"},{"key":"e_1_2_1_17_2","doi-asserted-by":"publisher","DOI":"10.2165\/00019053-199507060-00004"},{"key":"e_1_2_1_18_2","doi-asserted-by":"publisher","DOI":"10.2165\/00019053-199507060-00005"},{"key":"e_1_2_1_19_2","doi-asserted-by":"publisher","DOI":"10.1097\/00005650-199607000-00004"},{"key":"e_1_2_1_20_2","doi-asserted-by":"publisher","DOI":"10.1097\/00005650-200202000-00006"},{"key":"e_1_2_1_21_2","doi-asserted-by":"publisher","DOI":"10.1002\/(SICI)1096-911X(1998)30:1 <54::AID-MPO8>3.0.CO;2-Z"},{"key":"e_1_2_1_22_2","doi-asserted-by":"publisher","DOI":"10.1097\/00005650-200003000-00006"},{"key":"e_1_2_1_23_2","doi-asserted-by":"publisher","DOI":"10.1007\/s004310050071"},{"key":"e_1_2_1_24_2","doi-asserted-by":"publisher","DOI":"10.1016\/S0895-4356(01)00411-5"},{"key":"e_1_2_1_25_2","doi-asserted-by":"publisher","DOI":"10.1136\/bmj.324.7351.1417"},{"key":"e_1_2_1_26_2","doi-asserted-by":"publisher","DOI":"10.3109\/07853890109002092"},{"key":"e_1_2_1_27_2","doi-asserted-by":"publisher","DOI":"10.3109\/07853890109002088"},{"key":"e_1_2_1_28_2","doi-asserted-by":"publisher","DOI":"10.1002\/(SICI)1097-0142(19970715)80:2<258::AID-CNCR14>3.0.CO;2-T"},{"key":"e_1_2_1_29_2","doi-asserted-by":"publisher","DOI":"10.1017\/S0266462300101266"},{"key":"e_1_2_1_30_2","doi-asserted-by":"publisher","DOI":"10.1111\/j.1365-2516.2001.00476.x"},{"key":"e_1_2_1_31_2","first-page":"70","article-title":"Defekt des von Willebrand Faktor\u2010proteins. Gynakologische und psychische Probleme bei Frauen mit von Willebrand\u2010Syndrom","volume":"3","author":"Rozeik C","year":"1998","journal-title":"Gynakologische Geburtshilfe"},{"key":"e_1_2_1_32_2","doi-asserted-by":"publisher","DOI":"10.1542\/peds.108.6.e105"},{"key":"e_1_2_1_33_2","first-page":"491","article-title":"The neurochemical basis of cognitive deficits induced by brain iron deficiency: involvement of dopamine\u2013opiate system","volume":"46","author":"Youdim MBH","year":"2000","journal-title":"Cell Mol Biol"},{"key":"e_1_2_1_34_2","doi-asserted-by":"publisher","DOI":"10.1016\/S0140-6736(96)02341-0"},{"key":"e_1_2_1_35_2","doi-asserted-by":"publisher","DOI":"10.1080\/07315724.2001.10719054"}],"container-title":["American Journal of Hematology"],"original-title":[],"language":"en","link":[{"URL":"https:\/\/api.wiley.com\/onlinelibrary\/tdm\/v1\/articles\/10.1002%2Fajh.10327","content-type":"unspecified","content-version":"vor","intended-application":"text-mining"},{"URL":"https:\/\/onlinelibrary.wiley.com\/doi\/pdf\/10.1002\/ajh.10327","content-type":"unspecified","content-version":"vor","intended-application":"similarity-checking"}],"deposited":{"date-parts":[[2023,11,17]],"date-time":"2023-11-17T23:54:24Z","timestamp":1700265264000},"score":1,"resource":{"primary":{"URL":"https:\/\/onlinelibrary.wiley.com\/doi\/10.1002\/ajh.10327"}},"subtitle":[],"short-title":[],"issued":{"date-parts":[[2003,5,9]]},"references-count":34,"journal-issue":{"issue":"2","published-print":{"date-parts":[[2003,6]]}},"alternative-id":["10.1002\/ajh.10327"],"URL":"https:\/\/doi.org\/10.1002\/ajh.10327","archive":["Portico"],"relation":{},"ISSN":["0361-8609","1096-8652"],"issn-type":[{"value":"0361-8609","type":"print"},{"value":"1096-8652","type":"electronic"}],"subject":[],"published":{"date-parts":[[2003,5,9]]}}}