详情页 - 首都医科大学宣武医院知识库

当前位置：首页 > 详情页

A prospective study of health-related quality of life of boys with severe haemophilia A in China: comparing on-demand to prophylaxis treatment

文献详情

资源类型：

收录情况： ◇ SCIE

作者：

机构： [1]Capital Med Univ, Beijing Childrens Hosp, Hematol Oncol Ctr, Beijing, Peoples R China; [2]Minist Educ, Natl Key Discipline Pediat, Beijing Key Lab Pediat Hematol Oncol, Guangzhou, Guangdong, Peoples R China; [3]Southern Med Univ, Nanfang Hosp, Dept Hematol, Guangzhou, Guangdong, Peoples R China; [4]Chinese Acad Med Sci, Peking Union Med Coll, Peking Union Med Coll Hosp, Dept Pediat, Beijing, Peoples R China; [5]Chinese Acad Med Sci, Peking Union Med Coll, Blood Dis Hosp, Thrombosis & Hemostasis Ctr,Inst Hematol, Tianjin, Peoples R China; [6]Huazhong Univ Sci & Technol, Wuhan Union Med Coll Hosp, Dept Hematol, Wuhan, Peoples R China; [7]Chinese Acad Med Sci, Peking Union Med Coll, Peking Union Med Coll Hosp, Dept Hematol,Hemophilia Clin, Beijing, Peoples R China; [8]Univ Ottawa, Children Hosp Eastern Ontario, Div Hematol & Oncol, Dept Pediat Lab Med & Pathol, Ottawa, ON, Canada; [9]Univ Calgary, Alberta Hlth Serv, Foothills Hosp, Dept Med, Calgary, AB, Canada; [10]Univ Calgary, Alberta Hlth Serv, Foothills Hosp, Dept Pediat, Calgary, AB, Canada; [11]Univ Calgary, Alberta Hlth Serv, Foothills Hosp, Dept Oncol, Calgary, AB, Canada; [12]Southern Alberta Rare Blood & Bleeding Disorders, Calgary, AB, Canada; [13]Hosp Sick Children, Div Hematol Oncol, Toronto, ON, Canada; [14]Univ Toronto, Dept Pediat, Toronto, ON, Canada; [15]Laurentian Univ, Sch Rural & Northern Hlth, Sudbury, ON, Canada; [16]Laurentian Univ, Res Ctr Evaluating Childrens Hlth Outcomes ECHO, Sudbury, ON, Canada; [17]Laurentian Univ, 935 Ramsey Lake Rd, Sudbury, ON, Canada

出处：

DOI：

ISSN：

关键词： haemophilia health-related quality of life on-demand treatment outcomes paediatrics prophylaxis

摘要：

Introduction: Treatment for boys with haemophilia in China is rapidly improving; however, comprehensive outcomes have not been examined prospectively. Aim: The aim of this study was to evaluate the effect of short-term full-dose prophylaxis compared to on-demand treatment, on the Health-Related Quality of Life (HR-QoL) of boys with severe haemophilia A (HA) in China. Methods: Boys with severe HA (FVIII<1%) completed 3 months of on-demand treatment and 3 months of full-dose prophylaxis (25 FVIII IU per kg 3x per week). The primary outcomes were child-and parent-reported Canadian Hemophilia Outcomes - Kids Life Assessment Tool (CHO-KLAT) scores. The number and type of bleeds and Activities Scale for Kids (ASK) scores were also recorded. Results: Analyses included 23 boys between 4 and 15.9 years of age. The number of bleeds decreased by 94% on prophylaxis (P < 0.0001, Wilcoxon Signed-Rank test). The mean child-reported CHO-KLAT scores for boys >= 7 years (n = 20) was 61.4 (+/- 10.9) during on-demand treatment and 61.9 (+/- 11.4) following short-term prophylaxis (P = 0.72, paired t-test). The mean parent-reported CHO-KLAT score during the on-demand phase was 54.4 (+/- 10.5) with an increase of 3.8 points (+/- 8.1; P = 0.04, paired t-test) following prophylaxis. Conclusions: Child-reported CHO-KLAT scores were lower in boys with severe HA in China than reported in countries with access to full-dose prophylaxis. Boys reported higher HR-QoL scores than their parents. Small improvements in ASK scores were noted following the prophylaxis phase. These changes were only significant in the parent-reported CHO-KLAT scores. Longer term prospective clinical trials are needed in China to determine the impact of prophylaxis on HR-QoL in boys with severe HA.

基金：

语种：

被引次数：

WOS：

PubmedID：

中科院(CAS)分区：

出版当年[2016]版：

大类 | 3 区医学

小类 | 3 区血液学

最新[2023]版：

大类 | 2 区医学

小类 | 3 区血液学

JCR分区：

出版当年[2015]版：

Q2 HEMATOLOGY

最新[2023]版：

Q2 HEMATOLOGY

影响因子： 3 最新[2023版] 3.6 最新五年平均 2.673 出版当年[2015版] 2.498 出版当年五年平均 2.603 出版前一年[2014版] 3.569 出版后一年[2016版]

第一作者：

第一作者机构： [1]Capital Med Univ, Beijing Childrens Hosp, Hematol Oncol Ctr, Beijing, Peoples R China; [2]Minist Educ, Natl Key Discipline Pediat, Beijing Key Lab Pediat Hematol Oncol, Guangzhou, Guangdong, Peoples R China;

通讯作者：

通讯机构： [15]Laurentian Univ, Sch Rural & Northern Hlth, Sudbury, ON, Canada; [16]Laurentian Univ, Res Ctr Evaluating Childrens Hlth Outcomes ECHO, Sudbury, ON, Canada; [17]Laurentian Univ, 935 Ramsey Lake Rd, Sudbury, ON, Canada

推荐引用方式(GB/T 7714)：

APA：

MLA：

A prospective study of health-related quality of life of boys with severe haemophilia A in China: comparing on-demand to prophylaxis treatment

文献详情

相关文献