Project report
SWK-10. Survivorship: Education, Clinical Guidelines, and Transition to Adult Care
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Summary
Written by AI, not yet AICS's view · claude-haiku-4-5-20251001A pediatric neuro-oncology program at a large tertiary hospital developed a comprehensive survivorship care program for children who have survived brain tumors. The program includes customized patient education materials, clinical follow-up guidelines tailored to tumor type and treatment, and structured transition planning to adult care. Educational content was integrated into both patient handouts and the electronic medical record system to ensure long-term knowledge retention and care continuity. The program uses relationships with adult care providers to support smooth transitions for survivors across a seven-state region.
Key points
- Education materials were customized for neuro-oncology patients based on disease type and treatment received
- Follow-up guidelines and roadmaps were developed and customized by tumor type and treatment modality
- Diagnosis and treatment summaries were provided to patients at multiple time points and placed in the electronic medical record
- Relationships with adult care teams were established to support transition to adult medical care
- The program addresses variable local provider availability and medical complexity across the seven-state catchment area
Limitations
This is a program description rather than an evaluation, so it does not provide evidence of whether the survivorship program improves health outcomes or quality of life for brain tumor survivors. There is no comparison group or outcome measurement reported.
Abstract
Abstract As the cure rates of patients with pediatric brain tumors increases, the long term care needs of the survivors increase as well. Survivorship includes several facets of multidisciplinary care including education, clinical care guidelines, and transition to adult medical care. The neuro-oncology program at a large tertiary care hospital has developed a team to address survivorship needs. The Children’s Oncology Group (COG) Long-Term Follow-Up Guidelines for Survivors of Childhood, Adolescent, and Young Adult Cancers was utilized as a backbone that was then customized for neuro-oncology patient education including disease type and treatment. The education was compiled into patient handouts as well as electronic medical record (EMR) statements that can easily be added to a clinic note or letter to referring providers. In addition, a diagnosis and treatment summary was placed both in the EMR as well as given to patients at various time points to ensure long term knowledge. Next, follow-up guidelines and roadmaps were developed and customized to tumor type and treatment received (surgery, radiation, chemotherapy). The roadmaps ensure patients are receiving high-quality comprehensive follow-up and screening from a large multidisciplinary team. Finally, patients will transition to adult care. With a large seven state catchment area, the adult care providers vary on local provider availability, knowledge, and medical complexity of the survivor. Each patient is evaluated based on their needs, availability of care locally, and ability to travel. The team developed relationships with the clinical team at the academic center adjacent to the pediatric hospital to support a smooth transition to adult care. The adult neuro-oncology care team can also serve as a consulting service for local adult providers. The survivorship team will continue to address the complex needs of brain tumor survivors and provide education for a smooth transition to adult care.