Angelo Bianchi Bonomi Hemophilia and Thrombosis Centre, IRCCS Ca' Granda Ospedale Maggiore Policlinico Foundation, Milan, Italy.
Blood Transfus. 2019 Sep;17(5):385-390. doi: 10.2450/2019.0218-18. Epub 2019 Feb 4.
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.
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。