我国开展血友病康复已有17年历程。本文系统介绍了血友病康复现状、国家级继续医学教育培训的建立与实施,以及2019年对血友病康复从业人员工作及培训现状进行调研分析的情况。结果表明,现阶段血友病康复从业人员诊疗实践不足,需要通过相关培训提升他们的能力。
Hemophilia rehabilitation has been carried out in China for 17 years.This paper described the current situation of hemophilia rehabilitation, the establishment and implementation ofnational continuing medical education, then investigated the work and training status of hemophilia rehabilitation practitioners in 2019.The results showed that there was insufficient work practice of hemophilia rehabilitation practitioners. Rehabilitation practitioners who had completed the HJHS training had relatively good professional practice. The proportion of practitioners who had completed HJHS training in hemophilia centers was relatively high.Their professional practice was better than that of the employees from non-center, but they still need to further improve their professional skills through CME.
[1] Wu R, Wu X, Zhang N, et al. Joint disease status of severe and moderate haemophilia patients at the Beijing Children,s Hospital: early onset and rapid increasing severity of arthropathy in 90% of patients by 6 years of age[J]. Haemophilia, 2014,20(3):e227-230. DOI:10.1111/hae.12394.
[2] Liu Y, Chen L, Zhao H, et al. Analyses of joint health and influencing factors in different age groups of Chinese children with haemophilia[J]. Haemophilia, 2016,22(6):e545,e548. DOI:10.1111/hae.12983.
[3] 中华医学会血液学分会血栓与止血学组、中国血友病协作组. 血友病诊断与治疗中国专家共识(2017年版)[J].中华血液学杂志,2017,38(5):364-370. DOI:10.3760/cma.j.issn.0253-2727.2017.05.002.
[4] Roosendaal G, Lafeber FP. Pathogenesis of haemophilicarthropathy[J]. Haemophilia, 2006,12 Suppl 3:117-121. DOI:10.1111/j.1365-2516.2006.01268.x.
[5] Stephensen D, de Kleijn P, Matlary R, et al. Scope of practice of haemophilia physiotherapists: a European survey[J]. Haemophilia, 2019,25(3):514-520. DOI:10.1111/hae.13727.
[6] Sun J, Hilliard PE, Feldman BM, et al. Chinese hemophilia joint health score 2.1 reliability study[J]. Haemophilia, 2014,20(3):435-440. DOI:10.1111/hae.12330.
