Schooling after Childhood Cancer: Disseminating the Evidence to Improve Outcomes

Background: Existing evidence reveals gaps in communication between oncology providers and pediatric cancer patients/parents. Specifically, the project team’s work from Surviving Cancer, Thriving in Life shows patients/parents are not receiving appropriately timed information from providers about treatment impacts on cognitive skills and schooling or adequate information to advocate for their child’s needs. Nearly half of parents did not recall receiving any information about potential cognitive impacts or schooling, and more than half felt inadequately prepared for their child’s schooling.

Proposed Solution: Create and deploy accredited Continuing Medical Education (CME) opportunities to increase provider awareness of the PCORI-funded findings referenced above that establish specific knowledge of the problem. In addition, the project team will integrate the parent education roadmaps and accompanying videos with the relevant electronic medical record (EMR) standard of care protocols to reinforce oncology care provider awareness and ensure timely communication of relevant information to parents/patients.

Objectives:

• Increase oncology provider awareness of relevant evidence (communication gaps/knowledge needs)
• Examine dissemination strategies to improve relevant communication and increase patient/parent access to just-in-time (JIT) information that fills the gaps identified.

Activities: CME will be conducted for education oncology providers and an online version will be created. Information addressing gaps will be provided to parents/patients using JIT roadmaps/videos, delivered via EMR .

Outcomes: Developing a CME curriculum based on recent, published evidence and adapting it to online formats will enable scalable training that can impact practice and patient outcomes at the project institution and across this country. The project team expects to see significant improvement in parent-reported outcomes of preparedness and satisfaction with type, timing, and utility of information. In addition, the team anticipates that parents will report that they were able to use the information to take specific actions in support of their children’s schooling.

Patient and Stakeholder Engagement Plan: Parent stakeholders were key to developing the survey items for Surviving Cancer, Thriving in Life that led to the findings about gaps in communication, and the parent stakeholders for the proposed dissemination project will assist in determining which of these items should be used or modified for the current project. In addition, they will help determine if the project team is including items that accurately reflect parent priorities and outcomes for the baseline/post implementation survey. For CME training, parents will assist in developing the curriculum and review all content to ensure that it appropriately reflects parents’ needs and priorities. In addition, the project team will include personal stories to strengthen the CME. The team anticipates that including parent stakeholders’ personal stories will help deepen provider understanding of gaps in information and the importance of addressing these challenges in the clinical setting. Finally, the parent stakeholders will be included in quarterly data and compliance reviews and help to address any barriers or challenges.

Project Collaborators: The primary institution for this project is Johns Hopkins University, including faculty from the Schools of Medicine and Education. Hugo Moser Research Institute at Kennedy Krieger Institute is a collaborating institution.