JMIR Publications

ABSTRACT

Background:

The lifelong management of hemophilia is demanding and complex. In July 2019, we published a review to summarize telehealth interventions that facilitate monitoring of bleeding events and promoting the appropriate use of clotting factors among patients with hemophilia (Qian W et al. J Med Internet Res. 2019;21(7):e12340). This work has led to the development of a community program that aims to harness technology to promote self-management in 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:

Fifty-six participants (75% adult patients and 25% parents of pediatric patients; 87.5% with moderate-to-severe disease) were recruited from a local non-governmental 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, 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 application for the self-management of hemophilia. The Mann-Whitney U test was used to compare technology acceptance score across subgroups of different clinical and socioeconomic characteristics.

Results:

In general, the participants considered themselves skilled in operating mobile applications (mean = 4.3; 95% CI = 4.1–4.5). They were willing to learn to use the new mobile application 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). The 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 = .037). 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 healthcare 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. Findings of this survey are applied to design the key features of a patient-centered, multimodal program harnessing mobile technology to promote self-management in patients with hemophilia. Future work includes evaluating participants’ acceptability and perceived usability of the mobile application via user metrics, as well as assessing clinical and humanistic outcomes of this program. Clinical Trial: NA