Animated videos for childhood cancer precision medicine: development and evaluation with parents and patients

Previous research shows that families find concepts underpinning childhood cancer precision medicine challenging to understand. We developed three animated videos and then evaluated these videos' acceptability, accessibility, emotional impact, and impact on participants' understanding of precision medicine.

Eligible participants included adolescents and young adults with cancer (12-25 years) and parents of a child (< 25 years) with cancer who recently enrolled in a precision medicine trial. Participants evaluated the videos using a questionnaire containing validated and purpose-designed quantitative and qualitative items.

Twenty-three parents and five patients participated. Over 70% of participants rated each video as 'just right' in length, pace, and amount of information. Almost all felt the videos provided useful information about the precision medicine process (n_parents = 19/20, 95%; n_patients = 4/4, 100%) and would recommend the videos to other families (n_parents = 18/20, 90%; n_patients = 4/4, 100%). After watching the videos, parents' perceived understanding of key precision medicine concepts increased (p ≤ 0.011 for all items, e.g. possible risks and discomforts). Similarly, watching the videos increased parents' self-rated knowledge of all precision medicine-related terms that were initially poorly understood (p ≤ 0.016 for terms including 'precision medicine' and 'germline variant'). Qualitatively, participants reported valuing the videos and provided constructive feedback to improve the concision and quality of the videos.

Parents and patients responded positively to the videos about precision medicine for childhood cancer and felt they would benefit other families. The videos are a potentially useful complement to written consent information and clinical discussions to support understanding of complex precision medicine concepts.