Mobile health technology may play a role in the management of hemophilia. A review in Frontiers in Medicine examined the role and features of current applications, as well as limitations.
Hemophilia is a group of rare genetic bleeding disorders that are incurable, but have many treatment options available thanks to advances over the past several decades. Patients are best treated at a hemophilia treatment center and should encompass therapeutics, training and education about the disease, lifestyle management, and self-management. However, many patients don’t have access to a center or have to travel long distances to be seen at one.
Mobile health technology may be helpful to monitoring and managing patients with hemophilia, particularly in countries without systems of regular monitoring and assessment.
The authors conducted a systematic review to determine the role of mobile health applications—including phone, web-based, and software—in managing hemophilia.
Apps help patients keep track of infusions and symptoms, communicate with their specialist, report and document bleeds, and access educational materials. Pharmaceutical companies that make clotting factor concentrates and digital health companies have developed many of these apps.
The authors summarized some ways in which mobile health apps aim to improve challenges in hemophilia care:
- Maintain patient-provider communication. The authors noted that communication during home treatment leads to a better quality of life for patients and fewer medical visits. Apps allow for 2-way communication and a way for the provider to monitor the patient’s self-management.
- Support patient self-management. Adherence to treatment tends to decline when patients assume full responsibility for their care. Apps include electronic treatment logs and reminders to administer treatment.
- Enhance data sets. With permission, patient data could be included in hemophilia registries, leading to more data points for research.
- Build patient communities. Some apps have social networking to connect patients to each other. Isolation is a known burden associated with rare, chronic diseases.
Research into the effects of mobile health on patients with hemophilia is limited, but the authors found some small studies that demonstrated an improvement in health-related quality of life for patients.
Most studies were short and could not determine whether these apps improved long-term health outcomes.
Some adoption challenges still exist, as patients remain skeptical about privacy issues and health care providers need to adopt the applications as well. Further development of these apps may increase their role in hemophilia management.
Disclosure: One study author declared affiliations with biotech, pharmaceutical, and/or device companies. Please see the original reference for a full list of authors’ disclosures.
Dirzu N, Hotea I, Jitaru C, et al. Mobile health technology for the personalized therapy of hemophilia. Front Med (Lausanne). 2021;8:711973. doi:10.3389/fmed.2021.711973