机构：[1]Hematology and Oncology Center, Beijing Children’s Hospital Affiliated to Capital Medical University, Beijing, China医技科室职能科室临床流行病与循证医学中心血液中心首都医科大学附属北京儿童医院[2]Hematology Department, School of Medicine, Children’s Hospital of Zhejiang University, Hangzhou, China[3]Hematology& Oncology Department, Shenzhen Children’s Hospital, Shenzhen, China[4]Hematology Department, Shanxi Children’s Hospital, Taiyuan, China[5]Pediatric Department, Southern Medical University, Nanfang Hospital, Guangzhou, China[6]Pediatric Department, Shengjing Hospital of China Medical University, Shenyang, China中国医科大学盛京医院[7]Pediatric Hematology and Oncology Department, Chengdu Women and Children’s Central Hospital, Chengdu, China[8]Hematology Department, Hunan Children’s Hospital, Changsha, China[9]Pediatric Hematology Department, Inner Mongolia People’s Hospital, Huhehaote, China[10]Pediatric Department, Shandong Province Hospital, Jinan, China[11]Hematology Department, Wulumuqi Children’s Hospital, Wulumuqi, China[12]Pediatric Department, Affiliated Hospital of Guizhou Medical University, Guiyang, China[13]Hematology Department, Hebei Children’s Hospital, Shijiazhuang, China[14]Department of Hematology, Children’s Hospital of Eastern Ontario, Ottawa, Ontario, Canada[15]Department of Hematology, University of Calgary, Calgary, Alberta, Canada[16]Division of Hematology/Oncology, The Hospital for Sick Children, Toronto, Ontario, Canada[17]ECHO Research Centre, Laurentian University, Sudbury, Ontario, Canada[18]School of Rural and Northern Health and ECHO Research Centre, Laurentian University, Sudbury, Ontario, Canada
IntroductionThe treatment of haemophilia varies across countries and across regions within some countries. Similar variation has been observed in health-related quality of life (HR-QoL). Relatively little is known about the HR-QoL of boys with haemophilia in China. AimThe aim of this study was to describe the HR-QoL of boys with haemophilia in China using the Canadian Haemophilia Outcomes-Kids Life Assessment Tool (CHO-KLAT). MethodsBoys (4-18years of age) with haemophilia and their parents were enroled in a cross-sectional study. All parents/guardians of study subjects were requested to complete a CHO-KLAT questionnaire during a clinic visit, and report on several other clinical and socioeconomic factors in the past year. Boys who were > 7years also completed the CHO-KLAT. ResultsA 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 17.9years of age; 91% had haemophilia A, most had moderate (52%) or severe (36%) disease, and most were receiving sub-optimal on-demand therapy or low-dose prophylactic therapy. Child self-report CHO-KLAT scores were available for 171 boys 7years of age and ranged from 24.2 to 85.3 with a mean of 57.6 (n=171). Parent proxy-reported CHO-KLAT scores ranged from 25.0 to 88.7 with a mean of 55.1 (n=269). ConclusionHR-QoL 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 HR-QoL for boys with haemophilia in China.
第一作者机构：[1]Hematology and Oncology Center, Beijing Children’s Hospital Affiliated to Capital Medical University, Beijing, China
共同第一作者：
通讯作者：
通讯机构：[1]Hematology and Oncology Center, Beijing Children’s Hospital Affiliated to Capital Medical University, Beijing, China[18]School of Rural and Northern Health and ECHO Research Centre, Laurentian University, Sudbury, Ontario, Canada[*1]School of Rural and Northern Health and ECHO Research Centre, Laurentian University, Sudbury, Ontario, Canada.[*2]Hematology and Oncology Center, Beijing Children’s Hospital, Beijing, China.
推荐引用方式(GB/T 7714)：
L. Tang,W. Xu,C. G. Li,et al.Describing the quality of life of boys with haemophilia in China: Results of a multicentre study using the CHO-KLAT[J].HAEMOPHILIA.2018,24(1):113-119.doi:10.1111/hae.13349.
APA：
L. Tang,W. Xu,C. G. Li,F. Hou,X. Q. Feng...&R. Wu.(2018).Describing the quality of life of boys with haemophilia in China: Results of a multicentre study using the CHO-KLAT.HAEMOPHILIA,24,(1)
MLA：
L. Tang,et al."Describing the quality of life of boys with haemophilia in China: Results of a multicentre study using the CHO-KLAT".HAEMOPHILIA 24..1(2018):113-119
