CNS Survivorship Needs More Research, Funding, and Training, Expert Panel Says
Access and reimbursement, patient and provider education, core competencies, and survivorship research funding remain critical barriers for primary central nervous system (CNS) cancer survivorship, a team of National Cancer Institute Comprehensive Oncology Network Evaluating Rare CNS Tumors (NCI-CONNECT) experts reported in a workshop summary published in Neuro-Oncology Advances (https://academic.oup.com/noa/article/4/1/vdac029/6539697).
Prior to the two-day virtual workshop, the panel, which included several ONS members, conducted a survey of patients and family members, patient advocacy partners, healthcare providers, and researchers to identify the most common survivorship issues that CNS survivors face. Healthcare provider, researcher, and patient advocate respondents reported:
- Learning to live with deficits (77%)
- Psychological support (55%)
- Financial toxicity (32%)
- Loss of independence and managing uncertainty about the future (19%)
Patient and family respondents reported:
- Psychosocial support (51%)
- Adapting to new limitations (45%)
- Clinical care issues (45%)
- Need for educational resources (24%)
- Feeling alone and uncertain (22%)
- Financial toxicity (18%)
The survey also asked patients and family members what survivorship means to them, to which they responded, “Living through challenges,” “Having a positive outlook,” “Continuing to live life,” “Figuring out the new normal,” and “Moving past surgery and diagnosis.”
“Though a specialty with strong foundations in both oncology and neurology, neuro-oncology largely lacks evidence to support clinical recommendations and established guidelines for survivorship care for its unique patient population,” the panel concluded. “Survivorship and survivorship care need to be incorporated into neuro-oncology clinical trials, training, and funding, and other supports need to be expanded.”