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Describing the quality of life of boys with haemophilia in China: Results of a multicentre study using the CHO-KLAT.
Tang, L; Xu, W; Li, C G; Hou, F; Feng, X Q; Wang, H; Li, X J; Li, W L; Liu, J P; Sun, L R; Wang, S H; Jin, J; Fang, Q; Luke, K H; Poon, M C; Blanchette, V S; Usuba, K; Young, N L; Wu, R.
Afiliação
  • Tang L; Hematology and Oncology Center, Beijing Children's Hospital Affiliated to Capital Medical University, Beijing, China.
  • Xu W; Hematology Department, School of Medicine, Children's Hospital of Zhejiang University, Hangzhou, China.
  • Li CG; Hematology& Oncology Department, Shenzhen Children's Hospital, Shenzhen, China.
  • Hou F; Hematology Department, Shanxi Children's Hospital, Taiyuan, China.
  • Feng XQ; Pediatric Department, Southern Medical University, Nanfang Hospital, Guangzhou, China.
  • Wang H; Pediatric Department, Shengjing Hospital of China Medical University, Shenyang, China.
  • Li XJ; Pediatric Hematology and Oncology Department, Chengdu Women and Children's Central Hospital, Chengdu, China.
  • Li WL; Hematology Department, Hunan Children's Hospital, Changsha, China.
  • Liu JP; Pediatric Hematology Department, Inner Mongolia People's Hospital, Huhehaote, China.
  • Sun LR; Pediatric Department, Shandong Province Hospital, Jinan, China.
  • Wang SH; Hematology Department, Wulumuqi Children's Hospital, Wulumuqi, China.
  • Jin J; Pediatric Department, Affiliated Hospital of Guizhou Medical University, Guiyang, China.
  • Fang Q; Hematology Department, Hebei Children's Hospital, Shijiazhuang, China.
  • Luke KH; Department of Hematology, Children's Hospital of Eastern Ontario, Ottawa, Ontario, Canada.
  • Poon MC; Department of Hematology, University of Calgary, Calgary, Alberta, Canada.
  • Blanchette VS; Division of Hematology/Oncology, The Hospital for Sick Children, Toronto, Ontario, Canada.
  • Usuba K; ECHO Research Centre, Laurentian University, Sudbury, Ontario, Canada.
  • Young NL; School of Rural and Northern Health and ECHO Research Centre, Laurentian University, Sudbury, Ontario, Canada.
  • Wu R; Hematology and Oncology Center, Beijing Children's Hospital Affiliated to Capital Medical University, Beijing, China.
Haemophilia ; 24(1): 113-119, 2018 Jan.
Article em En | MEDLINE | ID: mdl-28922525
INTRODUCTION: The 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. AIM: The 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). METHODS: Boys (4-18 years 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 > 7 years also completed the CHO-KLAT. RESULTS: 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 years 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 ≥7 years 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). CONCLUSION: HR-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.
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Texto completo: 1 Base de dados: MEDLINE Assunto principal: Qualidade de Vida / Hemofilia B / Hemofilia A Tipo de estudo: Clinical_trials / Observational_studies / Prevalence_studies / Qualitative_research / Risk_factors_studies Limite: Adolescent / Child / Child, preschool / Humans / Male País/Região como assunto: Asia Idioma: En Revista: Haemophilia Assunto da revista: HEMATOLOGIA Ano de publicação: 2018 Tipo de documento: Article País de afiliação: China

Texto completo: 1 Base de dados: MEDLINE Assunto principal: Qualidade de Vida / Hemofilia B / Hemofilia A Tipo de estudo: Clinical_trials / Observational_studies / Prevalence_studies / Qualitative_research / Risk_factors_studies Limite: Adolescent / Child / Child, preschool / Humans / Male País/Região como assunto: Asia Idioma: En Revista: Haemophilia Assunto da revista: HEMATOLOGIA Ano de publicação: 2018 Tipo de documento: Article País de afiliação: China