Use of telehealth in the delivery of comprehensive care for patients with haemophilia and other inherited bleeding disorders

Abstract

Advances in technology such as telemedicine (TM) have made access to cost-effective, quality health care feasible for remote patients. TM is especially well suited for patients with chronic disorders such as haemophilia and related haemostatic disorders that benefit not only from more frequent interaction with care providers at a specialized haemophilia treatment center but also from consultations with other specialists. Telehealth refers to a broader application of TM and includes non-clinical services such as education, provider training, administrative meetings etc. Collaboration with the local primary care provider for management and implementation is key for successful and sustainable TM. This review article provides an overview of types of telemedicine, technical aspects, its benefits and challenges and focuses on the applicability of this technology to persons with bleeding and other blood disorders. Examples of TM strategies, process flow of TM clinic and experiences at the authors haemophilia treatment center (HTC) setting are shared. In addition, mobile health (mHealth) and electronic health (eHealth), both a part of telehealth, and their applications are briefly described. Clearly, widespread adoption of this technology will not only enhance care of patients but will enable more people, especially in underserved areas, to receive specialty care.

Pilot evaluation of home delivery programme in haemophilia

“…[18][19][20][21] In a recent study, the use of an app improved the adherence measured with the VERITAS-Pro scale, quality of life and illness perception after 1 year. 22 Several experiences of telehealth in haemophilia have been reported, 23 including an interesting experience of telemedicine by videoconference in paediatric patients. 24 The results of our survey highlight the preference for apps, and we are implementing the employment of a specific app for recording infusions and bleed-related occurrences.…”

The role of telemedicine in the delivery of health care in the COVID‐19 pandemic

“…Compared to the previous survey there was a marked increase in those identifying geographical access as a technical assistance need. Subsequently, one of four projects of national significance funded by the NHPCC evaluated how HTCs could provide care remotely to rural areas using telemedicine 8 . The pilot study demonstrated a high level of patient satisfaction with the telemedicine approach and significant cost savings, both in terms of cost of travel and time away from work.…”

“…The pilot study demonstrated a high level of patient satisfaction with the telemedicine approach and significant cost savings, both in terms of cost of travel and time away from work. While telemedicine outreach clinics have long existed and been utilized in a Accepted Article number of HTCs to resolve geographical access challenges the pilot project results published in 2018 demonstrated that, while not without challenges, telemedicine is especially well-suited for patient s with chronic disorders such as hemophilia 8 .…”

“…We need more research demonstrating that telemedicine improves patient-centered outcomes and that it can do so efficiently -not just for individual encounters but at the population level, without leading to overuse 12 . In summary, in the context of a pandemic, telemedicine has the potential to increase convenience, improve access, improve patient safety and better manage costs, limiting exposures to patients and HCPs while Accepted Article reducing the burden on healthcare facilities allowing them to deal with the sickest patients. In a more general sense, widespread implementation of telemedicine will not only enhance the direct care of patients with bleeding disorders but will enable more people, especially those living in underserved areas, to receive specialty hematology care 8 . With the recent trends in the healthcare marketplace seeing an increase in enrollment in high-deductible consumer-driven health plans, rewarding providers for value requires moving encounters to lower cost options while maintaining quality care delivery.…”

How we approach: Training pediatric coagulationists

“…Tools that may improve comprehensive care and transition include telemedicine and mobile health technology (mHealth). Some Hemophilia Treatment Centers (HTCs) are incorporating telehealth to reach patients who live at a distance from the HTC and/or to supplement education provided at annual comprehensive visits. mHealth may be used to track outcomes such as activity and medication adherence.…”