Background: Current methodologies for LTFU in HL include registries, cohort studies and clinical trials, each of which have limitations including provision of cross-sectional rather than longitudinal data, restriction to stereotypic patient populations and uncommon ability to follow patients for >10 years.
Aim: To assess the feasibility of a Mobile App to collect secure, patient-derived data for the LTFU of HL
Methods: Participants using the MHMH App enter HL diagnostic and treatment details according to treatment type, dates and clinical outcomes. Follow up health data is collected under the headings: Heart Health, Lung Health, Other Cancer, Hormones, Fertility, Immune Health and Nervous System. After completing the questionnaire upon study entry, participants receive an email reminder to update information every 6 months. To protect privacy, two encrypted databases are maintained separately: one containing the identifiable participant information and the second containing responses to the health questionnaire. The databases can only be linked by application of a master code held offline by senior investigators.
Results: The MHMH App has undergone significant IT architecture changes since inception (2019), notably a change in coding language from Xamarin to “.NET MAUI” which is a cross-platform framework for App development across iOS and Android from a single shared codebase. Advantages of the change in code include improved ability for developers to make cross-platform changes, allowing for additional research questions to be added easily within MHMH. MHMH underwent beta testing with fifteen HL participants in May 2024, median age 40 (range 26-59), 40% male, who received first line treatment between 2008-2023, ABVD (86.7%) and escBEACOPP (13.3%). Participants tested MHMH in the context of a live webinar during which immediate feedback on user experience and questionnaire content was obtained for further development.
Conclusion: The MHMH App is now developed end-to-end, with the pilot phase of the completed App anticipated in August 2024 in the Australian HL population, with recruitment supported by clinicians, research collaboratives (Australasian Lymphoma & Leukaemia Group) and patient support groups (Lymphoma Australia). Future international rollout will follow, subsequent to implementations of improvements / learnings from the pilot phase.
Nicole Wong Doo, Janlyn Falconer, Gajan Kailainathan, Patrick E. Lawrence, Georgia Klemm, Nathan Chapman, Judith Trotman