JMIR Publications

ABSTRACT

Background:

The introduction of home therapy for hemophilia has empowered patients and their families to manage the disease more independently. However, the self-management of hemophilia is demanding and complex. The uses of innovative interventions delivered by telehealth routes, such as social media, web-based and mobile applications, may help to monitor bleeding events and promote the appropriate use of clotting factors among patients with hemophilia.

Objective:

This review aims to systematically summarize the literature evaluating the effectiveness of telehealth interventions for improving health outcomes in patients with hemophilia, and provides direction for future research.

Methods:

A search was conducted on Ovid MEDLINE, EMBASE and PubMed for studies that (1) focused on patients with hemophilia A or B; (2) tested the use of remote telehealth interventions via Internet, wireless, satellite, telephone and mobile phone media; (3) and reported on at least one of the following outcomes: quality of life; monitoring of bleeding episodes, joint damage or other measures of functional status; medication adherence; patient knowledge or any other outcomes related to empowering patients to be active decision makers in the emotional, social or medical management of their illness. Reviews, commentaries or case reports comprising 10 or fewer cases, were excluded.

Results:

Sixteen articles fulfilled the inclusion criteria. The majority of the interventions (n=13) were designed with the primary objective of empowering patients and caregivers to manage their condition and treatment more independently. The components of the interventions were rather homogenous and typically involved electronic (1) logging and reminders for prophylactic infusions; (2) reporting of spontaneous and traumatic bleeding events; (3) monitoring of infusion product usage and home inventory and (4) real-time communication with healthcare professionals and hemophilia clinics. Telemedicine-supported education and information interventions seemed to be particularly effective among adolescent and young adult patients. Although the patients reported improvements in their health-related quality of life and perception of illness, telemonitoring devices did not appear to have a significant effect on quantifiable health outcomes, such as joint health. Longitudinal studies seemed to suggest that the response and compliance rates decreased over time.

Conclusions:

Preliminary evidence from this review suggests that telehealth-delivered interventions could feasibly improve patients’ adherence to medication use and promote independence in disease management. Given the complexity and resources involved in developing a mature and established system, support from a dedicated network of hemophilia specialists and data managers will be required to maintain the technology, improve compliance and validate the electronic data locally.