A Pilot Test of an Educational Video for Tumor-Normal Paired Genetic Testing in Pediatric Oncology: Acceptability and Implementation Barriers
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Medical Sciences
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Pediatric Oncology
Behavioral Oncology
Implementation Science
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Abstract
Background: Tumor-Normal Paired (TNP) Genetic Testing is often recommended for children diagnosed with cancer to diagnose cancer predisposition and guide treatment. Educational videos can provide supplemental information to increase understanding of testing. This project aimed to describe caregiver-reported acceptability of a TNP educational video, as well as barriers and facilitators of implementation.
Methods: Caregivers (N=96) with a child newly diagnosed with cancer and receiving TNP genetic testing completed a baseline demographic survey within 1-4 weeks of testing and an acceptability survey within 4-6 weeks of TNP results. TNP video topics included genetic principles, testing process, result categories, legal protections, familial cascade testing, and follow-up recommendations. The TNP video was delivered using a QR code in a brochure upon enrollment. Study staff and caregiver survey feedback about delivery and content of the video were categorized according to the Consolidated Framework for Implementation Research.
Results: Uptake of the video was initially low (41.7% viewed the video before the follow up survey); the video was later embedded into the follow-up survey. Most caregivers endorsed that the video was helpful and easy to understand. Implementation barriers spanned all CFIR categories and included lack of some informational details, video delivery timing, constricted clinical and genetic testing time frame, confusing caregiver understanding, and limited video delivery impacted by QR codes and lack of provider distribution and reminders.
Discussion: The video was widely accepted, but caregivers prefer earlier delivery and varied formats for different audiences. Next steps are to make informed modifications to the video and implementation strategies and further evaluate it.