Table 2.

Recommendations of Expert Panel 2

Identified challenges and opportunities to develop robust survivorship care guidelines in neuro-oncology:

• Find practical ways to develop, support, and implement personalized risk-stratified survivorship and caregiver care by including palliative care, neuropsychological care, and rehabilitation.

• Prioritize new ways to care for patients focused not just on treatment but on their whole lives.

• Develop common language across neuroscience, cancer, cognitive science, psychology, patients, and advocates to understand one another and define primary endpoints.

• Shift focus from overall survival and disease-free survival to what patients find meaningful, including the ability to work and have relationships.

• Incorporate survivorship measures and endpoints into therapeutic clinical trials.

• Study primary CNS patients prospectively to develop a database of information highlighting unique challenges in living with primary CNS cancer.

• Equip patients with information and tools to advocate for themselves to redefine what it means to be a brain tumor survivor and combat the tendency to disregard survivors with terminal disease.

• Address survivorship challenges related to long-term neurological and cognitive effects of treatment and provide education to neuro-oncology providers to improve awareness.

• Inspired by advocacy groups, bring people together to address challenges in caregiver research related to limited sample sizes and the need to work across various ethnic and cultural backgrounds.

The following highlights ideas from panelists on what can be done locally and globally to improve survivorship care:

• Establish ongoing, concrete, and regular collaborations.

• Familiarize all stakeholders with definitions of survivorship and outcomes to measure.

• Engage local providers in the community in research efforts to meet survivors where they are and develop approaches to improve survivorship care that works outside of cancer centers.

• Collect survivorship and outcomes data in accurate and consistent ways to enable comparisons across institutions and studies.

• Maximize electronic health records, insurance databases, data science, and genome sequencing, as resources to expedite achieving results.

• Reach out to underserved groups with concrete steps and clear metrics for success to ensure that advances in survivorship care are accessible to all patients.

• Expand and capitalize on the realization that some of the challenges in primary CNS cancer survivors occur in survivors of other cancers, related to chemo-brain, immunotherapy side effects, such that progress in survivorship care for CNS cancers will have an impact in the larger cancer community.