Abstract
BACKGROUND: Iron chelation therapy (ICT) is essential for people with hematological disorders requiring chronic transfusions to minimize the risk of iron overload, yet suboptimal adherence is prevalent. Widespread use of personal technology makes mobile health (mHealth) an attractive platform to promote adherence. OBJECTIVE: This study aimed to examine access to mobile technology and preferences for an mHealth intervention to improve adherence to ICT. METHODS: A cross-sectional survey that included 63 items assessing technology access, mHealth preferences, and demographics was administered through REDCap (Research Electronic Data Capture), a digital research data tool, during packed red blood cell transfusion visits. Parents of children receiving chronic transfusions, as well as adolescents and young adults receiving chronic transfusions, were enrolled between August 2018 and June 2019. Patients had to have a hematologic diagnosis requiring chronic transfusions, be receiving ICT, and be aged 12 years or older to complete the survey. Parents were required to have a child aged 24 months who met these criteria. RESULTS: A total of 60 participants were included (median age 31.5, IQR 20-39 years; n=40, 67% female), with 29 (48%) being parents and 31 (52%) being patients. All parents and patients owned an electronic tablet, a smartphone, or both. The most endorsed mHealth app features among all participants included laboratory test monitoring (55/60, 92%), reminders to take iron chelation medication (50/60, 83%), and education about ICT (49/60, 82%). Parents' most endorsed features included laboratory test monitoring (27/29, 93%) and education about ICT (25/29, 86%). Patients' most endorsed features included laboratory test monitoring (28/31, 90%) and reminders to take iron chelation medication (28/31, 90%). There were no substantial differences between parents and patients in their preferences. CONCLUSIONS: Both parents and adolescents and young adults reported a strong interest in multiple mHealth app features. Participants provided valuable insights into optimal strategies and preferred app features for developing a multifunctional technology-based behavioral intervention to promote ICT adherence.