Table 1.

Recommendations of Expert Panel 1

The identified challenges and opportunities:

• Improve the understanding and awareness of people living with primary CNS tumors and their caregivers as well as their providers about the importance of early and continuous palliative and psychosocial care.

• Include caregivers in the neuro-oncology’s further development of survivorship care.

• Identify risks for high-symptom burden and optimize the use of health informatics technology to integrate clinical decision support and uniform measures of patient symptom reports into clinical care, which can be leveraged by specialists and community physicians alike.

• Create dynamic systems to respond to changing needs of the survivor over time using implementation science and patient-reported outcomes data to promote individualized guideline-based care across health systems, which is critical to optimize health and patient-centered outcomes.

• Manage the cost and funding opportunities associated with longitudinal epidemiological studies across the continuum of cancer care and comparisons of common and distinct characteristics among survivors from diverse backgrounds and with different tumor types especially those understudied.

• Understand the association of symptom burden with social determinants of health, including race, ethnicity, annual income, caring for children, living alone, unemployment, and stress, all of which may be more impactful on symptoms than clinical characteristics and treatment factors.

• Advance toward greater understanding of physiologic mechanisms underlying common symptoms, including cognitive dysfunction and fatigue, to develop more targeted and effective interventions.

• Develop more accurate and adequate means for measuring the survivor and caregiver experience about toxicities such as hearing loss and tinnitus to facilitate care independent of complex testing procedures.

• Explore opportunities for neuro-oncology to engage with survivorship research and survivorship researchers to engage with neuro-oncology survivors as well as multidisciplinary research.

• Increase awareness and education among providers, survivors, and their caregivers about survivors’ care needs regarding delayed effects, health and psychosocial concerns occurring months to years following upfront diagnosis and treatment, and their need for continuity of care, monitoring visits, and referrals to palliative care and psychosocial support resources.

• Consider dedicated multidisciplinary survivorship clinics, including neuropsychology, endocrinology, neurology, fertility services, among others to allow survivors and caregivers to see multiple providers and access resources in one visit.

• Increase awareness about financial hardships faced by those living with primary CNS tumors especially among those aged 18 to 39 arising from increased healthcare expenses and decreased health insurance access in the face of decreased to no income due to under- or unemployment stemming from their cancer.

The following points highlight immediate next steps identified by the expert panelists to improve survivorship and support for survivorship research in neuro-oncology:

• Explore opportunities for interventions to address adverse outcomes among CNS tumor survivors, such as technology interventions that track physical activities, including sleep quality and healthful eating.

• Improve and establish benefit of survivorship care plans to help patients navigate the healthcare system and understand personalized care recommendations.

• Foster collaborative work and alignment with those working on survivorship care plans within oncology survivorship.

• Establish and/or expand patient registries to better understand long-term survivorship experiences and needs to enable research and interventions according to identified needs.

• Develop patient-reported measures to study symptoms, functional status, and quality of life and to connect them with underlying molecular mechanisms to develop and test treatments for pain, fatigue, and other symptoms.

• Align key stakeholders, including survivors, caregivers, and specialty and primary care clinicians, such that the goals and priorities for quality care are both clear and consistent.

• Involve end users (clinicians, caregivers, and survivors) in the design and development of health information technology interventions to ensure they are beneficial and useful in practice.

• Dedication of more new funding to survivorship research in neuro-oncology and highlighting the applicability of current NCI funding opportunities to neuro-oncology survivorship research such as caregiver, multimorbidity, team-based care.

• Develop funding mechanisms that support essential survivorship care research and trials, as well as training grants to engage researchers early in their careers to develop a workforce who are involved survivorship and survivorship care issues.