Abstract
BACKGROUND: The lifelong management of hemophilia is demanding and complex. In July 2019, we published a review in the Journal of Medical Internet Research, summarizing telehealth interventions that facilitate monitoring of bleeding events and promoting the appropriate use of clotting factors among patients with hemophilia. This work has led to the development of a community program that aims to harness technology to promote self-management among patients with hemophilia in Hong Kong. OBJECTIVE: Before the inception of this program, we conducted a cross-sectional survey to evaluate the patients' level of technology acceptance and identify their expectations of the use of mobile technology for self-management of hemophilia. METHODS: In total, 56 participants (75% adult patients and 25% parents of pediatric patients; 87.5% with moderate to severe disease) were recruited from a local nongovernmental organization that serves patients with hemophilia. They rated their perceived confidence and acceptance in using the new mobile technology (score 1 to 5 for each item, with a higher score indicating better acceptance) using a structured questionnaire (adapted from the Technology Acceptance Model). They also identified the top features that they perceived to be the most important components of a mobile app for the self-management of hemophilia. The Mann-Whitney U test was used to compare technology acceptance scores across subgroups of different clinical and socioeconomic characteristics. RESULTS: In general, the participants considered themselves skilled in using mobile apps (mean 4.3, 95% CI 4.1-4.5). They were willing to learn to use the new mobile app to organize their bleeding records (mean 4.0, 95% CI 3.7-4.3) and to manage their health (mean 4.2, 95% CI 4.1-4.5). Participants who lived in public housing (a surrogate marker for lower socioeconomic status in Hong Kong) reported lower technology acceptance than those who lived in private housing (P=.04). The most important features identified by the participants concerned documenting of infusion logs (n=49, 87.5%), bleeding events (n=48, 85.7%), and the secure delivery of the bleeding information to health care professionals (n=40, 71.4%). CONCLUSIONS: It is encouraging to infer that patients with hemophilia in Hong Kong are receptive to the use of mobile health technology. The findings of this survey are applicable in designing the key features of a patient-centered, multimodal program harnessing mobile technology to promote self-management among patients with hemophilia. Future studies should evaluate participants' acceptability and perceived usability of the mobile app via user metrics and assess clinical and humanistic outcomes of this program.