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Published on: October 6, 2023
Development and Evaluation of an Electronic Patient-Reported Outcome Platform for Children Undergoing Radiation
Mikaela Doig1, Andrew Cunningham2, Victoria Bedford3
1UniSA Allied Health and Human Performance, University of South Australia, Adelaide, South Australia, Australia.
Insights
A new electronic platform was developed to collect health-related quality of life (HRQoL) data from children undergoing radiation therapy (RT) using patient-reported outcome measures (PROMs). The platform was found to be intuitive and child-friendly in testing.
Area of Science:
- Pediatric Oncology
- Digital Health
- Quality of Life Research
Background:
- Health-related quality of life (HRQoL) is not routinely assessed in pediatric radiation therapy (RT).
- Patient-reported outcome measures (PROMs) are crucial for understanding patient experiences.
Purpose of the Study:
- To co-design and evaluate an electronic platform for routine HRQoL assessment in pediatric RT.
- To support the collection of PROMs from children undergoing radiation therapy.
Main Methods:
- User-centered design approach for platform development.
- Iterative alpha and beta testing with children, parents, and clinicians.
- Thematic analysis of participant feedback for refinement.
Main Results:
- The electronic PROM platform was successfully developed and tested.
- Participants found the platform intuitive and child-friendly.
- Minor navigation issues on mobile devices were identified, with suggestions for improvement.
Conclusions:
- The electronic PROM platform is a viable tool for supporting HRQoL assessment in pediatric RT.
- Further research is required to assess its clinical feasibility, usability, and acceptability.
Introduction:
Health-related quality of life (HRQoL) outcomes are not routinely collected in paediatric radiation therapy (RT). This study co-designed and evaluated an electronic platform to support routine HRQoL assessment using patient-reported outcome measures (PROMs).
Methods:
A digital platform was developed following a user-centred design approach. Development included planning with consumers and clinicians, identifying user needs through interviews and iterative design refinements. Alpha testing was performed with consumers. Beta testing involved directed tasks by children, parents and clinician participants to evaluate the developed platform. Thematic analysis of participant feedback was performed to identify refinements and shape clinical implementation strategies.
Results:
Iterative alpha testing with end-users led to significant improvements in functionality and aesthetics. Beta testing involved 18 participants, including seven healthcare professionals, seven children and four parents. All participants successfully navigated the platform, completed tasks and interpreted PROM results. Participants described the platform as intuitive and child-friendly. Challenges included minor navigation issues on mobile devices. Suggestions for improvement included streamlined result visualisation and enhancements to the instructional material. Whilst parents and clinicians recognised the value of allowing parents to view their child's PROM results, considerations to ensure sensitivity were described.
Conclusion:
The electronic PROM platform was successfully developed to support HRQoL assessment of children undergoing RT. Future research is needed to evaluate the feasibility, usability and acceptability in clinical practice.
