Perspectives on supporting schooling for children with cancer: Findings from two PCORI Engagement Projects (230)

2:15 – 3:15 pm Saturday, October 30

Education is an important social determinant of health, and treatment for childhood cancers can result in long-term neurocognitive effects (deficits in processing speed, working memory, executive function, and attention), which are associated with reduced educational attainment, employment, and ability to live independently.

Thus, neurocognitive impacts represent significant, longstanding concerns for the more than 500,000 childhood cancer survivors in the United States. Unfortunately, only a minority of families report receiving services and information regarding neurocognitive effects, indicating the need for clinicians to improve their understanding, education, and intervention for these toxicities. Over the past 3.5 years, our team has examined family and provider perspectives on addressing treatment-related neurocognitive effects and preferences for communication and interventions. This session will summarize information learned through our six-phase project that aims to understand the family experience, develop a model for evaluating this experience, develop roadmaps to assist with posttreatment schooling, and create continued medical education content. Briefly, families report feeling overwhelmed by and unprepared for neurocognitive toxicities, yet clinicians report providing this information, indicating the need for new approaches to patient/family education. Though 93% of pediatric oncologists feel responsible for discussing neurocognitive impacts of therapy, only 28% report confidence in understanding the topic—suggesting the need for more education. There is also discordance between when families prefer to have these conversations and when and how providers indicate sharing this information. This session will include a review of neurocognitive effects of therapy and discuss methods to improve communication with families. The education roadmaps and continuing medical education materials developed from this work will be shared and used as exemplars. We also will share findings regarding family preferences for communication timing, character, and educational materials.