Surviving Cancer, Thriving in Life

Survivors of childhood cancer often experience difficulties with learning and neurocognitive function after treatment that present unexpected challenges. These difficulties are especially common among those who have had treatment targeting the central nervous system. Neuropsychological assessments that characterize specific needs, and school supports that help to address these needs, are the front line of defense for many children. However, even when these are available, ensuring access to such services and making good use of assessments is not straightforward or simple. Parents often report feeling poorly prepared to support and advocate for their child when learning challenges arise. This is particularly important because these challenges can adversely affect survivors’ health and school-related quality of life. Although survival rates for childhood cancer are rising, little work has addressed how to help patients and families prepare for and navigate post-treatment educational challenges or how to effectively support them in accessing needed services. Effective models are needed for involving patients, families, clinicians, researchers, and school and community stakeholders in a new generation of research on cancer survivorship. This approach will benefit from involvement of patients and their families in order to develop research questions focused on improving access to supports and, ultimately, quality of life (QoL). The project team proposes to work collaboratively with affected families and school, clinical, research, and community stakeholders to understand family concerns and unmet needs and begin to develop a corps of parent advocates and resources that can address these challenges. The project will be led by Kennedy Krieger Institute and Johns Hopkins University Schools of Medicine and Education, with support from local advocacy organizations.

Aims include:

• Collaboratively explore patient-centered concerns across medical, educational, social, and community domains
• Develop a skilled, collaborative community of patient and stakeholder partners with a shared understanding of the issues and needed resources and create high-priority items for dissemination
• Generate and prioritize comparative effectiveness research questions for future work addressing outcomes of importance with regard to QoL in survivorship. Aims will be accomplished via task force and workshop meetings, driven by and actively engaging childhood cancer survivors, their families, and local medical, educational, and community stakeholders. Online surveys will ensure views of a diverse population of patients/parents are considered. Patient/family partners will be active and engaged participants throughout the workshop/task force process, participating in meeting planning, information generation and analysis, resource creation, and materials evaluation and dissemination.

Outcomes/impacts will include:

• A detailed catalog of patient/family-reported concerns and needs regarding neurocognitive function and associated QoL in survivorship
• A comprehensive inventory of existing resources addressing neurocognitive and educational needs of survivors, including an analysis of gaps between existing resources and the catalog of needs/concerns, and a prototype resource package to meet these needs
• Dissemination of these resources via medical and advocacy organizations and of broader content and process-oriented material via scientific presentations and peer-reviewed publications. The project team anticipates collaboratively identifying prioritized comparative effectiveness research questions facilitating a patient-centered research agenda for improving health-related QoL for childhood cancer survivors.