Journal Article Observational Study Multicenter Study Epublish
PubMed: 42579605 DOI: 10.2196/80718
Feasibility of Implementing an Electronic Patient-Reported Outcome-Based Digital Health Platform in Pediatric Oncology and Palliative Care: Insights From the MyPal4Kids Multicenter Observational Study.
JMIR Cancer 12:e80718
Authors: Marcel Meyerheim, Lenka Radová, Anna Burns-Gebhart, Marvin Mergen, Pantelis Natsiavas, Panos Bonotis, Christina Karamanidou, Sheila Payne, Julia Downing, Julie Ling, Annette Sander, Kasra Mirzaie, Susan Dokutur, Jana Vaculíková, Petr Lokaj, Ondřej Rohleder, Norbert Graf
Affiliations
- Department of Pediatric Oncology and Hematology, Faculty of Medicine, Saarland University, Building 9, Homburg, 66421, Germany, 49 68411628045.
- Center of Molecular Medicine, Central European Institute of Technology, Masaryk University, Brno, Czech Republic.
- Department for Pediatric Oncology and Hematology, Hannover Medical School, Hannover, Germany.
- Institute of Applied Biosciences, Centre for Research and Technology Hellas, Thessaloniki, Greece.
- International Observatory on End of Life Care, Division of Health Research, Lancaster University, Lancaster, United Kingdom.
- International Children's Palliative Care Network, Bristol, United Kingdom.
- European Association for Palliative Care, Vilvoorde, Belgium.
- Department of Pediatric Oncology, University Hospital Brno, Brno, Czech Republic.
Abstract
BACKGROUND
Digital health solutions that incorporate electronic patient-reported outcomes (ePROs) hold promise for enhancing communication and patient engagement in pediatric oncology and palliative care. While ePROs are increasingly used in adult populations, their use in children, especially when combined with gamification, remains underexplored.
OBJECTIVE
This MyPal4Kids study aimed to assess the feasibility, acceptability, and user engagement of a digital health platform that integrates ePROs and a serious game, designed for pediatric oncology patients aged 6-17 years and their caregivers.
METHODS
A multicenter observational feasibility study was conducted between December 2020 and September 2022 at 3 clinical sites in Germany and the Czech Republic. A total of 83 children and adolescents with cancer, their parent or legal guardian, as well as 10 health care professionals (HCPs) participated. Primary outcomes included platform acceptability and engagement, assessed through recruitment, participation, and attrition rates, adherence, and usability ratings. Secondary outcomes focused on the feasibility of ePRO-based data capture and the perceived impact on HCP workflows and communication. A mixed methods design was used, combining in-app data and surveys with qualitative insights from focus groups.
RESULTS
The recruitment rate was 55%, with an attrition rate of 18%. Usability was rated positively, with most users finding the platform intuitive. Sustained engagement declined over time, particularly among older children who found the serious game insufficiently engaging. Adherence varied by age group and HCP involvement. Participants reported increased motivation when symptom reports were acknowledged by HCPs, although the impact on communication was perceived inconsistently.
CONCLUSIONS
The developed platform shows potential for use in clinical care and research. However, maintaining long-term engagement remains a challenge. Tailoring content to different age groups and strengthening feedback mechanisms from HCPs are critical for improving the user experience. Successful implementation in routine clinical practice will require integration into existing workflows and digital infrastructure, along with ongoing user-driven development.
MeSH
Communication, Workflow, Palliative Care, Child, Digital Health