{"status":"ok","message-type":"work","message-version":"1.0.0","message":{"indexed":{"date-parts":[[2026,4,6]],"date-time":"2026-04-06T09:10:48Z","timestamp":1775466648433,"version":"3.50.1"},"reference-count":16,"publisher":"Wiley","issue":"5","license":[{"start":{"date-parts":[[2017,6,21]],"date-time":"2017-06-21T00:00:00Z","timestamp":1498003200000},"content-version":"vor","delay-in-days":0,"URL":"http:\/\/creativecommons.org\/licenses\/by-nc-nd\/4.0\/"}],"funder":[{"DOI":"10.13039\/100007343","name":"Shire","doi-asserted-by":"publisher","id":[{"id":"10.13039\/100007343","id-type":"DOI","asserted-by":"publisher"}]}],"content-domain":{"domain":[],"crossmark-restriction":false},"short-container-title":["Haemophilia"],"published-print":{"date-parts":[[2017,9]]},"abstract":"<jats:title>Abstract<\/jats:title><jats:p>The inherited bleeding disorder von Willebrand disease (<jats:styled-content style=\"fixed-case\">VWD<\/jats:styled-content>) is challenging to diagnose owing to disease heterogeneity, lack of a definitive laboratory test and variations in diagnostic criteria. We evaluated the impact of diagnosis and diagnostic delay on patient outcomes. The PharMetrics Plus Database was interrogated for medical claims for <jats:styled-content style=\"fixed-case\">VWD<\/jats:styled-content> (<jats:styled-content style=\"fixed-case\">ICD<\/jats:styled-content>\u20109 286.4) and bleeding events between 1 January 2006 and 30 June 2015. Longitudinal analysis was performed of patients newly diagnosed with <jats:styled-content style=\"fixed-case\">VWD<\/jats:styled-content> (\u22659\u00a0months' continuous enrolment before first <jats:styled-content style=\"fixed-case\">VWD<\/jats:styled-content> claim) through 24\u00a0months following diagnosis. In total, 32\u00a0028 diagnosed, including 18\u00a0182 newly diagnosed, patients were identified. Most patients (72%) were female. Prediagnosis, bleeding symptoms were most commonly managed by a hospitalist\/emergency room physician. Misrecognition of <jats:styled-content style=\"fixed-case\">VWD<\/jats:styled-content> was common, with 25% of patients visiting the same specialist type at least twice for an episodic bleed before diagnosis. Thirty\u2010seven percentage of patients had no diagnostic laboratory test within 24\u00a0months of their initial diagnostic claim. Bleed claims reduced following diagnosis: 41% and 26% of female and male patients, respectively, had claims in the year prediagnosis, falling to 21% and 9% of patients at 1\u20102\u00a0years postdiagnosis. The proportion of patients with multiple bleed claims also decreased, from 17% to 6% (females) and 7% to 3% (males). Serially misrecognized patients continued to have more bleeding episodes than other patients, although bleed frequency was lower than before diagnosis. There is a need for improved patient management from bleeding presentation onward to reduce the time to <jats:styled-content style=\"fixed-case\">VWD<\/jats:styled-content> diagnosis and to enhance patient outcomes.<\/jats:p>","DOI":"10.1111\/hae.13292","type":"journal-article","created":{"date-parts":[[2017,6,21]],"date-time":"2017-06-21T12:52:36Z","timestamp":1498049556000},"page":"743-749","source":"Crossref","is-referenced-by-count":30,"title":["Impact of diagnosis of von Willebrand disease on patient outcomes: Analysis of medical insurance claims data"],"prefix":"10.1111","volume":"23","author":[{"ORCID":"https:\/\/orcid.org\/0000-0002-9509-9415","authenticated-orcid":false,"given":"R. F.","family":"Sidonio","sequence":"first","affiliation":[{"name":"Department of Pediatrics Emory University and Children's Healthcare of Atlanta  Atlanta GA USA"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"K. M.","family":"Haley","sequence":"additional","affiliation":[{"name":"Department of Pediatrics Oregon Health &amp; Science University  Portland Oregon"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"D.","family":"Fallaize","sequence":"additional","affiliation":[{"name":"Charles River Associates  Boston MA USA"}],"role":[{"role":"author","vocabulary":"crossref"}]}],"member":"311","published-online":{"date-parts":[[2017,6,21]]},"reference":[{"key":"e_1_2_9_2_1","doi-asserted-by":"publisher","DOI":"10.1055\/s-0031-1281039"},{"key":"e_1_2_9_3_1","doi-asserted-by":"publisher","DOI":"10.1111\/j.1365-2516.2007.01643.x"},{"key":"e_1_2_9_4_1","doi-asserted-by":"publisher","DOI":"10.1111\/jth.13243"},{"key":"e_1_2_9_5_1","doi-asserted-by":"publisher","DOI":"10.1016\/j.pathol.2016.03.001"},{"key":"e_1_2_9_6_1","doi-asserted-by":"publisher","DOI":"10.1055\/s-2006-947860"},{"key":"e_1_2_9_7_1","first-page":"262","article-title":"Towards personalised therapy for von Willebrand disease: a future role for recombinant products","volume":"14","author":"Favaloro EJ","year":"2016","journal-title":"Blood Transfus"},{"key":"e_1_2_9_8_1","doi-asserted-by":"crossref","first-page":"536","DOI":"10.1182\/asheducation-2014.1.536","article-title":"Management of VWD","volume":"2014","author":"Neff AT","year":"2014","journal-title":"Hematology Am Soc Hematol Educ Program"},{"key":"e_1_2_9_9_1","doi-asserted-by":"publisher","DOI":"10.1046\/j.1351-8216.2003.00832.x"},{"key":"e_1_2_9_10_1","doi-asserted-by":"publisher","DOI":"10.1046\/j.1365-2516.1999.00342.x"},{"key":"e_1_2_9_11_1","unstructured":"The Lewin Group I.VWD Strategic Summit Report2015. National Hemophilia Foundation website. Available at:https:\/\/www.hemophilia.org\/sites\/default\/files\/article\/documents\/NHF-Strategic-Summit-Report-on-von-Willebrand-disease_1.pdf. Accessed December 13 2016."},{"key":"e_1_2_9_12_1","doi-asserted-by":"publisher","DOI":"10.1016\/S0049-3848(09)70151-3"},{"key":"e_1_2_9_13_1","first-page":"e1\u20105","article-title":"Evaluation of bleeding disorders in women with menorrhagia: a survey of obstetrician\u2010gynecologists","volume":"269","author":"Byams VR","year":"2012","journal-title":"Am J Obstet Gynecol"},{"key":"e_1_2_9_14_1","doi-asserted-by":"publisher","DOI":"10.1016\/j.jpeds.2014.09.026"},{"key":"e_1_2_9_15_1","doi-asserted-by":"publisher","DOI":"10.1160\/TH13-11-0952"},{"key":"e_1_2_9_16_1","unstructured":"Centers for Disease Control and Prevention.Report on the Universal Data Collection Program 2005\u20132009. Centers for Disease Control and Prevention website. Available at:http:\/\/www.cdc.gov\/ncbddd\/blooddisorders\/udc\/documents\/report-udcprogram_january2005-December-2009_jan-2014.pdf. Accessed December 13 2016."},{"key":"e_1_2_9_17_1","first-page":"94","article-title":"Von Willebrand's disease in the year 2003: towards the complete identification of gene defects for correct diagnosis and treatment","volume":"88","author":"Castaman G","year":"2003","journal-title":"Haematologica"}],"container-title":["Haemophilia"],"original-title":[],"language":"en","link":[{"URL":"https:\/\/api.wiley.com\/onlinelibrary\/tdm\/v1\/articles\/10.1111%2Fhae.13292","content-type":"application\/pdf","content-version":"vor","intended-application":"text-mining"},{"URL":"https:\/\/onlinelibrary.wiley.com\/doi\/pdf\/10.1111\/hae.13292","content-type":"unspecified","content-version":"vor","intended-application":"similarity-checking"}],"deposited":{"date-parts":[[2023,9,24]],"date-time":"2023-09-24T14:02:15Z","timestamp":1695564135000},"score":1,"resource":{"primary":{"URL":"https:\/\/onlinelibrary.wiley.com\/doi\/10.1111\/hae.13292"}},"subtitle":[],"short-title":[],"issued":{"date-parts":[[2017,6,21]]},"references-count":16,"journal-issue":{"issue":"5","published-print":{"date-parts":[[2017,9]]}},"alternative-id":["10.1111\/hae.13292"],"URL":"https:\/\/doi.org\/10.1111\/hae.13292","archive":["Portico"],"relation":{},"ISSN":["1351-8216","1365-2516"],"issn-type":[{"value":"1351-8216","type":"print"},{"value":"1365-2516","type":"electronic"}],"subject":[],"published":{"date-parts":[[2017,6,21]]}}}