Background: Childhood cancer survivors are at risk for long-term treatment-related health problems, including cognitive impacts that affect their educational attainment, independence, and future employment. Communication between providers and patients/parents is critical to ensuring that parents are prepared for challenges their children face in survivorship; however, most survivorship care is focused on medical issues with little attention to psychosocial or cognitive concerns. Work is needed that addresses existing gaps and reflects the priorities of patients/parents and treating providers.
Proposed Solution to the Problem: The project team will review existing standards of care for patient/family-provider communication and support regarding long-term neurocognitive effects of childhood cancer treatment, and published evidence for communication strategies and their implementation. This review will identify relevant evidence that exists/does not yet exist (i.e., gaps) and support engaging parent, provider, and educator stakeholders to develop consensus via Delphi survey and identify patient-centered outcomes research (PCOR)/comparative effectiveness research (CER) priorities for next steps in ensuring better quality of life and cognitive outcomes for survivors.
Objectives: The primary goal of the proposed project is to engage stakeholders in developing research priorities and questions that matter to them regarding communication of neurocognitive late-effects of treatment and relevant patient/family supports. The team will review relevant existing evidence, identify remaining gaps, develop a PCOR/CER research priority list that reflects the needs of survivors’ families, and identify strategies for sharing stakeholder-prioritized research questions.
Activities: Activities will include team review and discussion of existing evidence for patient-provider and healthcare-school team communication related to educationally related neurocognitive impacts, and for existing standards of care and their implementation; Delphi surveys designed to help identify consensus for PCOR research topics; and team review of highly ranked topics to develop and prioritize relevant CER research questions to support better outcomes for survivors.
Projected Outcomes and Outputs: The team will develop a professional manuscript describing the evidence review and existing gaps as well as a companion piece summarizing these findings for educators and patients/families. The team will develop a patient-centered, stakeholder-informed research topic priority list and list of prioritized related research questions that will be shared with other researchers shortly following the end of the project period and used to develop future high-priority projects grounded by stakeholder input (medium-term). Long-term outcomes will include conducting future PCOR/CER projects to improve outcomes in pediatric survivorship with a continued focus on stakeholder engagement.
Patient and Stakeholder Engagement Plan: The team will collaborate with continuing parent and provider stakeholder partners to increase the team’s size, diversity, and national representation through networking, social media, foundation partners, and institutional resources. Stakeholders will join two virtual and one in-person working meetings, identify their priorities via surveys and discussion, and provide critical input and feedback to develop high-priority research questions with the team.
Project Collaborators: Collaborators include the Kennedy Krieger Institute Department of Neuropsychology and the Johns Hopkins School of Medicine Division of Pediatric Oncology.