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本文引用的文献

1
Miracle of haemophilia drugs: Personal views about a few main players.血友病药物的奇迹:几位主要参与者的个人观点。
Haemophilia. 2018 Jul;24(4):557-562. doi: 10.1111/hae.13519. Epub 2018 May 29.
2
Quantification of physical activity in adult patients with haemophilic arthropathy in prophylaxis treatment using a fitness tracker.使用健身追踪器对接受预防治疗的成年血友病性关节病患者的身体活动进行量化。
Haemophilia. 2018 Jan;24(1):e28-e32. doi: 10.1111/hae.13388. Epub 2017 Dec 22.
3
Use of telehealth in the delivery of comprehensive care for patients with haemophilia and other inherited bleeding disorders.远程医疗在为血友病和其他遗传性出血性疾病患者提供全面护理中的应用。
Haemophilia. 2018 Jan;24(1):33-42. doi: 10.1111/hae.13364. Epub 2017 Dec 5.
4
The haemtrack home therapy reporting system: Design, implementation, strengths and weaknesses: A report from UK Haemophilia Centre Doctors Organisation. haemtrack 家庭治疗报告系统:设计、实施、优势和劣势:来自英国血友病中心医生组织的报告。
Haemophilia. 2017 Sep;23(5):728-735. doi: 10.1111/hae.13287. Epub 2017 Aug 14.
5
Telerehabilitation: Review of the State-of-the-Art and Areas of Application.远程康复:技术现状与应用领域综述
JMIR Rehabil Assist Technol. 2017 Jul 21;4(2):e7. doi: 10.2196/rehab.7511.
6
Systematic review of interventions to improve patient uptake and completion of pulmonary rehabilitation in COPD.慢性阻塞性肺疾病(COPD)患者提高肺康复治疗参与度及完成率干预措施的系统评价
ERJ Open Res. 2017 Jan 30;3(1). doi: 10.1183/23120541.00089-2016. eCollection 2017 Jan.
7
Strategies to encourage physical activity in patients with hemophilia to improve quality of life.鼓励血友病患者进行体育活动以改善生活质量的策略。
J Blood Med. 2016 May 17;7:85-98. doi: 10.2147/JBM.S84848. eCollection 2016.
8
The past and future of haemophilia: diagnosis, treatments, and its complications.血友病的过去和未来:诊断、治疗及其并发症。
Lancet. 2016 Jul 9;388(10040):187-97. doi: 10.1016/S0140-6736(15)01123-X. Epub 2016 Feb 18.
9
Telehealth Videoconferencing for Children With Hemophilia and Their Families: A Clinical Project.针对血友病患儿及其家庭的远程医疗视频会议:一个临床项目。
J Pediatr Oncol Nurs. 2016 Jul;33(4):282-8. doi: 10.1177/1043454215607340. Epub 2015 Oct 28.
10
Computational Intelligence and Game Design for Effective At-Home Stroke Rehabilitation.用于有效居家中风康复的计算智能与游戏设计
Games Health J. 2013 Apr;2(2):81-88. doi: 10.1089/g4h.2012.0073.

远程医疗和远程康复:血友病的当前和未来应用。

Telemedicine and telerehabilitation: current and forthcoming applications in haemophilia.

机构信息

Angelo Bianchi Bonomi Hemophilia and Thrombosis Centre, IRCCS Ca' Granda Ospedale Maggiore Policlinico Foundation, Milan, Italy.

出版信息

Blood Transfus. 2019 Sep;17(5):385-390. doi: 10.2450/2019.0218-18. Epub 2019 Feb 4.

DOI:10.2450/2019.0218-18
PMID:30747703
原文链接:https://pmc.ncbi.nlm.nih.gov/articles/PMC6774932/
Abstract

In persons with haemophilia (PWH), the importance of comprehensive disease management to prevent bleeding, joint damage and secondary diseases has been well established. However, because haemophilia is a chronic disease, intervention programmes carried out for prolonged periods of time may create problems of patient adherence. Driven by continuous technological innovation, telemedicine is being increasingly proposed as a way to provide PWH with a range of services designed to improve their health, saving the time and cost involved in going to the treatment centre, and increasing therapeutic adherence. The aim of this article is to identify and discuss the tools available for the management of PWH by means of telemedicine and information technology. Video conferences are helpful to obtain a rapid evaluation at a distance of the occurrence and severity of bleeding episodes by the personnel of the treatment centre. Cell phones and associated applications (apps) help to improve the regular implementation of replacement therapy and monitor any ensuing adverse effect. Portable sensors help to improve lifestyle and to monitor the degree of physical activity through the fulfilment of a given number of daily walking steps and other physical activities. In the context of telerehabilitation, exergames have the potential to improve the musculoskeletal function of PWH by exploiting the recreational features of videogames. Thus, telemedicine and its multiple applications may be useful in the management of haemophilia, especially for patients living far from specialised centres. However, since this is a recent and rapidly evolving field, published studies are few and have, so far, involved only a limited number of cases. Therefore, additional evidence needs to be obtained by means of accrual of cumulative data from multiple centres specialised in haemophilia.

摘要

在血友病患者(PWH)中,综合疾病管理对于预防出血、关节损伤和继发疾病的重要性已经得到充分证实。然而,由于血友病是一种慢性病,长期进行干预计划可能会导致患者的依从性问题。随着技术的不断创新,远程医疗越来越被提出作为一种为 PWH 提供一系列旨在改善其健康的服务的方式,节省了前往治疗中心的时间和成本,并提高了治疗的依从性。本文旨在确定和讨论通过远程医疗和信息技术管理 PWH 的可用工具。视频会议有助于治疗中心的人员远距离快速评估出血事件的发生和严重程度。手机和相关应用程序(apps)有助于改善定期替代治疗的实施情况,并监测任何随之而来的不良反应。便携式传感器有助于改善生活方式,并通过完成每日规定的步行步数和其他体育活动来监测身体活动的程度。在远程康复方面,运动游戏有潜力通过利用视频游戏的娱乐功能来改善 PWH 的肌肉骨骼功能。因此,远程医疗及其多种应用在血友病的管理中可能是有用的,尤其是对于远离专业中心的患者。然而,由于这是一个新兴且快速发展的领域,目前发表的研究很少,而且迄今为止只涉及了有限数量的病例。因此,需要通过从多个专门治疗血友病的中心积累累积数据来获得更多的证据。