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.

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Authors

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

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

Pier Mannuccio Mannucci - Angelo Bianchi Bonomi Hemophilia and Thrombosis Centre, IRCCS Ca' Granda Ospedale Maggiore Policlinico Foundation, Milan, Italy

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