{"status":"ok","message-type":"work","message-version":"1.0.0","message":{"indexed":{"date-parts":[[2025,11,11]],"date-time":"2025-11-11T15:45:10Z","timestamp":1762875910711,"version":"3.37.3"},"reference-count":19,"publisher":"Wiley","issue":"1","license":[{"start":{"date-parts":[[2017,9,18]],"date-time":"2017-09-18T00:00:00Z","timestamp":1505692800000},"content-version":"vor","delay-in-days":0,"URL":"http:\/\/onlinelibrary.wiley.com\/termsAndConditions#vor"}],"content-domain":{"domain":[],"crossmark-restriction":false},"short-container-title":["Haemophilia"],"published-print":{"date-parts":[[2018,1]]},"abstract":"<jats:sec><jats:title>Introduction<\/jats:title><jats:p>The treatment of haemophilia varies across countries and across regions within some countries. Similar variation has been observed in health\u2010related quality of life (<jats:styled-content style=\"fixed-case\">HR<\/jats:styled-content>\u2010QoL). Relatively little is known about the <jats:styled-content style=\"fixed-case\">HR<\/jats:styled-content>\u2010QoL of boys with haemophilia in China.<\/jats:p><\/jats:sec><jats:sec><jats:title>Aim<\/jats:title><jats:p>The aim of this study was to describe the <jats:styled-content style=\"fixed-case\">HR<\/jats:styled-content>\u2010QoL of boys with haemophilia in China using the Canadian Haemophilia Outcomes\u2010Kids Life Assessment Tool (<jats:styled-content style=\"fixed-case\">CHO<\/jats:styled-content>\u2010<jats:styled-content style=\"fixed-case\">KLAT<\/jats:styled-content>).<\/jats:p><\/jats:sec><jats:sec><jats:title>Methods<\/jats:title><jats:p>Boys (4\u201018\u00a0years of age) with haemophilia and their parents were enroled in a cross\u2010sectional study. All parents\/guardians of study subjects were requested to complete a <jats:styled-content style=\"fixed-case\">CHO<\/jats:styled-content>\u2010<jats:styled-content style=\"fixed-case\">KLAT<\/jats:styled-content> questionnaire during a clinic visit, and report on several other clinical and socioeconomic factors in the past year. Boys who were &gt; 7\u00a0years also completed the <jats:styled-content style=\"fixed-case\">CHO<\/jats:styled-content>\u2010<jats:styled-content style=\"fixed-case\">KLAT<\/jats:styled-content>.<\/jats:p><\/jats:sec><jats:sec><jats:title>Results<\/jats:title><jats:p>A total of 269 parents of boys with haemophilia, from 13 hospitals in 12 provinces, were enroled during 2014. The boys ranged from 4.0 to 17.9\u00a0years of age; 91% had haemophilia A, most had moderate (52%) or severe (36%) disease, and most were receiving sub\u2010optimal on\u2010demand therapy or low\u2010dose prophylactic therapy. Child self\u2010report <jats:styled-content style=\"fixed-case\">CHO<\/jats:styled-content>\u2010<jats:styled-content style=\"fixed-case\">KLAT<\/jats:styled-content> scores were available for 171 boys \u22657\u00a0years of age and ranged from 24.2 to 85.3 with a mean of 57.6 (n\u00a0=\u00a0171). Parent proxy\u2010reported <jats:styled-content style=\"fixed-case\">CHO<\/jats:styled-content>\u2010<jats:styled-content style=\"fixed-case\">KLAT<\/jats:styled-content> scores ranged from 25.0 to 88.7 with a mean of 55.1 (n\u00a0=\u00a0269).<\/jats:p><\/jats:sec><jats:sec><jats:title>Conclusion<\/jats:title><jats:p><jats:styled-content style=\"fixed-case\">HR<\/jats:styled-content>\u2010QoL scores in boys with haemophilia in China were substantially lower than reported from Canadian and European boys with haemophilia. Longer term prospective studies are required to examine the factors impacting the <jats:styled-content style=\"fixed-case\">HR<\/jats:styled-content>\u2010QoL for boys with haemophilia in China.<\/jats:p><\/jats:sec>","DOI":"10.1111\/hae.13349","type":"journal-article","created":{"date-parts":[[2017,9,18]],"date-time":"2017-09-18T14:45:04Z","timestamp":1505745904000},"page":"113-119","source":"Crossref","is-referenced-by-count":10,"title":["Describing the quality of life of boys with haemophilia in China: Results of a multicentre study using the <scp>CHO<\/scp>\u2010<scp>KLAT<\/scp>"],"prefix":"10.1111","volume":"24","author":[{"given":"L.","family":"Tang","sequence":"first","affiliation":[{"name":"Hematology and Oncology Center Beijing Children's Hospital Affiliated to Capital Medical University  Beijing China"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"W.","family":"Xu","sequence":"additional","affiliation":[{"name":"Hematology Department School of Medicine Children's Hospital of Zhejiang University  Hangzhou China"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"C. G.","family":"Li","sequence":"additional","affiliation":[{"name":"Hematology&amp; Oncology Department Shenzhen Children's Hospital  Shenzhen China"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"F.","family":"Hou","sequence":"additional","affiliation":[{"name":"Hematology Department Shanxi Children's Hospital  Taiyuan China"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"X. Q.","family":"Feng","sequence":"additional","affiliation":[{"name":"Pediatric Department Southern Medical University Nanfang Hospital  Guangzhou China"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"H.","family":"Wang","sequence":"additional","affiliation":[{"name":"Pediatric Department Shengjing Hospital of China Medical University  Shenyang China"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"X. J.","family":"Li","sequence":"additional","affiliation":[{"name":"Pediatric Hematology and Oncology Department Chengdu Women and Children's Central Hospital  Chengdu China"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"W. L.","family":"Li","sequence":"additional","affiliation":[{"name":"Hematology Department Hunan Children's Hospital  Changsha China"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"J. P.","family":"Liu","sequence":"additional","affiliation":[{"name":"Pediatric Hematology Department Inner Mongolia People's Hospital  Huhehaote China"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"L. R.","family":"Sun","sequence":"additional","affiliation":[{"name":"Pediatric Department Shandong Province Hospital  Jinan China"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"S. H.","family":"Wang","sequence":"additional","affiliation":[{"name":"Hematology Department Wulumuqi Children's Hospital  Wulumuqi China"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"J.","family":"Jin","sequence":"additional","affiliation":[{"name":"Pediatric Department Affiliated Hospital of Guizhou Medical University  Guiyang China"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Q.","family":"Fang","sequence":"additional","affiliation":[{"name":"Hematology Department Hebei Children's Hospital  Shijiazhuang China"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"K. H.","family":"Luke","sequence":"additional","affiliation":[{"name":"Department of Hematology Children's Hospital of Eastern Ontario  Ottawa Ontario Canada"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"M. C.","family":"Poon","sequence":"additional","affiliation":[{"name":"Department of Hematology University of Calgary  Calgary Alberta Canada"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"V. S.","family":"Blanchette","sequence":"additional","affiliation":[{"name":"Division of Hematology\/Oncology The Hospital for Sick Children  Toronto Ontario Canada"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"K.","family":"Usuba","sequence":"additional","affiliation":[{"name":"ECHO Research Centre Laurentian University  Sudbury Ontario Canada"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"ORCID":"https:\/\/orcid.org\/0000-0002-1739-3299","authenticated-orcid":false,"given":"N. L.","family":"Young","sequence":"additional","affiliation":[{"name":"School of Rural and Northern Health and ECHO Research Centre Laurentian University  Sudbury Ontario Canada"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"R.","family":"Wu","sequence":"additional","affiliation":[{"name":"Hematology and Oncology Center Beijing Children's Hospital Affiliated to Capital Medical University  Beijing China"}],"role":[{"role":"author","vocabulary":"crossref"}]}],"member":"311","published-online":{"date-parts":[[2017,9,18]]},"reference":[{"key":"e_1_2_9_2_1","doi-asserted-by":"publisher","DOI":"10.1056\/NEJM200106073442307"},{"key":"e_1_2_9_3_1","doi-asserted-by":"publisher","DOI":"10.1182\/blood-2003-05-1457"},{"key":"e_1_2_9_4_1","doi-asserted-by":"publisher","DOI":"10.1111\/hae.12375"},{"key":"e_1_2_9_5_1","doi-asserted-by":"publisher","DOI":"10.1111\/hae.12394"},{"key":"e_1_2_9_6_1","first-page":"97","article-title":"Current situation of diagnosis for hemophilia in Chinese children\u2014single center analysis of 417 hemophiliac cases in thirteen years","volume":"20","author":"Tang L","year":"2013","journal-title":"Chinese J Thromb Hemostasis"},{"key":"e_1_2_9_7_1","doi-asserted-by":"publisher","DOI":"10.1111\/j.1365-2516.2010.02348.x"},{"key":"e_1_2_9_8_1","doi-asserted-by":"publisher","DOI":"10.1111\/j.1365-2516.2012.02926.x"},{"key":"e_1_2_9_9_1","doi-asserted-by":"publisher","DOI":"10.1111\/j.1355-0691.2004.00877.x"},{"key":"e_1_2_9_10_1","doi-asserted-by":"publisher","DOI":"10.1002\/pbc.20618"},{"key":"e_1_2_9_11_1","first-page":"794","article-title":"Validation of the Chinese version of the Canadian Haemophilia Outcomes\u2010Kids\u2019 Life Assessment Tool (the CHO\u2010KLAT)","volume":"20","author":"Wu R","year":"2014","journal-title":"Health Qual Life Outcomes"},{"key":"e_1_2_9_12_1","doi-asserted-by":"publisher","DOI":"10.1186\/1477-7525-10-112"},{"key":"e_1_2_9_13_1","doi-asserted-by":"publisher","DOI":"10.1016\/j.jval.2013.02.004"},{"key":"e_1_2_9_14_1","doi-asserted-by":"publisher","DOI":"10.1111\/hae.12597"},{"key":"e_1_2_9_15_1","doi-asserted-by":"publisher","DOI":"10.1111\/hae.13031"},{"key":"e_1_2_9_16_1","first-page":"50","volume-title":"Report on the Annual Global Survey","author":"World Federation of Hemophilia","year":"2014"},{"key":"e_1_2_9_17_1","doi-asserted-by":"publisher","DOI":"10.1111\/hae.13230"},{"key":"e_1_2_9_18_1","doi-asserted-by":"publisher","DOI":"10.1182\/blood.V99.7.2337"},{"key":"e_1_2_9_19_1","doi-asserted-by":"publisher","DOI":"10.1046\/j.1365-2141.1999.01463.x"},{"key":"e_1_2_9_20_1","doi-asserted-by":"publisher","DOI":"10.1002\/9781119979401.ch11"}],"container-title":["Haemophilia"],"original-title":[],"language":"en","link":[{"URL":"https:\/\/api.wiley.com\/onlinelibrary\/tdm\/v1\/articles\/10.1111%2Fhae.13349","content-type":"application\/pdf","content-version":"vor","intended-application":"text-mining"},{"URL":"https:\/\/onlinelibrary.wiley.com\/doi\/pdf\/10.1111\/hae.13349","content-type":"unspecified","content-version":"vor","intended-application":"similarity-checking"}],"deposited":{"date-parts":[[2023,9,23]],"date-time":"2023-09-23T17:16:46Z","timestamp":1695489406000},"score":1,"resource":{"primary":{"URL":"https:\/\/onlinelibrary.wiley.com\/doi\/10.1111\/hae.13349"}},"subtitle":[],"short-title":[],"issued":{"date-parts":[[2017,9,18]]},"references-count":19,"journal-issue":{"issue":"1","published-print":{"date-parts":[[2018,1]]}},"alternative-id":["10.1111\/hae.13349"],"URL":"https:\/\/doi.org\/10.1111\/hae.13349","archive":["Portico"],"relation":{},"ISSN":["1351-8216","1365-2516"],"issn-type":[{"type":"print","value":"1351-8216"},{"type":"electronic","value":"1365-2516"}],"subject":[],"published":{"date-parts":[[2017,9,18]]}}}