Empowering People With Haemophilia: A Mobile Solution for Self-Management

Haemophilia is a congenital bleeding disorder requiring extensive self-management. Mobile applications can support these processes. This study aimed to design and evaluate a mobile application to facilitate self-management in persons with haemophilia.

The study was conducted in two phases. First, a literature review was performed in PubMed, Web of Science, and Scopus, and searches were made in Google Play, Apple Store, and the websites of the World Federation of Hemophilia and Hemophilia Federation of America to identify information-educational needs and necessary capabilities for app design. A questionnaire based on these needs was then provided to physicians and patients for approval. In the second phase, the application prototype was designed according to the approved information-educational needs and necessary capabilities and evaluated for usability using the standard Questionnaire for User Interface Satisfaction with 17 patients. Data were analysed using SPSS 20.

Sixty-two information-educational needs and capabilities with scores above 50% were included in the design. The designed application can provide the conditions for recording demographic information, medical history, treatment information, bleeding information, and injuries and accidents and provide the education on self-management for patients. Moreover, it has the capabilities to set various reminders (taking medication, rehabilitation-physical activities, and appointments with the therapist), set the treatment plan, send reports to the therapist, communicate with other persons with haemophilia and therapists, and record notes. Patients evaluated the application's usability at a "good" level.

The haemophilia self-management app can enhance patients' quality of life by addressing their educational needs and supporting self-management.