Accepted for/Published in: JMIR Pediatrics and Parenting
Date Submitted: Dec 3, 2024
Open Peer Review Period: Dec 12, 2024 - Feb 6, 2025
Date Accepted: Oct 27, 2025
(closed for review but you can still tweet)
Technology Access and Preferences for Smartphone App Intervention to Optimize Iron Chelation Adherence among Adolescents, Young Adults, and Parents of Individuals Receiving Chronic Transfusions: A Cross-Sectional Study
ABSTRACT
Background:
Iron chelation therapy (ICT) is an essential medication 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:
To examine access to mobile technology and preferences for an mHealth intervention to improve adherence to ICT.
Methods:
A cross-sectional survey was administered through REDCap during packed red blood cell (pRBC) transfusion visits. Parents of children receiving chronic transfusions, as well as adolescents and young adults (AYAs) receiving chronic transfusions were enrolled between August 2018 and June 2019. Patients had to have a hematologic diagnosis requiring chronic transfusions, be on ICT, and be 12 years or older to complete the survey. Parents were required to have a child older than 24 months who met these criteria.
Results:
A total of 60 participants were included (median age [IQR] 31.5 [20-39]; female, 66.7% [40/60]), with 29 parents and 31 patients. The most endorsed mHealth app features among all participants included laboratory monitoring (91.7%, 55/60), reminders to take ICT (83.3%, 50/60), and education about ICT (81.7%, 49/60). Parents’ most endorsed features included laboratory monitoring (93.1%, 27/29), and education about ICT (86.2%, 25/29). Patients’ most endorsed features included laboratory monitoring (90.3%, 28/31) and reminders to take iron chelation medication (90.3%, 28/31). There were no significant differences between parents and patients in their preferences, although there was a greater proportion of patients compared to parents who preferred positive feedback when taking medications as an app feature (87.1% vs. 68.96%, p =0.09).
Conclusions:
Parents and AYAs reported a strong interest in multiple mHealth app features. Participants provided valuable insight into optimal strategies and preferred app features for developing a multifunctional technology-based behavioral intervention to promote ICT adherence.
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