Proceedings of the Survivorship Care in Neuro-Oncology Workshop sponsored by the Comprehensive Oncology Network Evaluating Rare CNS Tumors (NCI-CONNECT)
Authors: Leeper Heather E , Tonorezos Emily , Mayer Deborah , Bakitas Marie , Chang Susan , Cooley Mary E , Hervey-Jumper Shawn , Miaskowski Christine , Sherwood Paula , Tsien Christina , Wallgren Kimberly , Willmarth Nicole , Arons David , Acquaye Alvina , King Amanda L , Penas-Prado Marta , Vera Elizabeth , Gilbert Mark R , Armstrong Terri S ,   NCI-CONNECT Survivorship Care in Neuro-Oncology Workshop, Armstrong Terri S , Leeper Heather E , Gilbert Mark R , Acquaye Alvina , Arzbaecher Jean , Bakitas Marie , Dionne-Odom J Nicholas , Fink Karen , Hayes Christi , Leeper Heather , Lollo Nicole , Loughan Ashlee , Oliver Kathy , Roche Kayla , Sherwood Paula , Stearn Sylvia , Timmer Michael , Amidei Christina , Blakeley Jaishri , Cachia David , Cooke Laura , Cooley Mary , Gondi Vinai , Leach Danielle , Mendoza Tito , Miaskowski Christine , Morgan Kendall , Nabors Burt , Naines Kristie , Rogers James , Sharma Akanksha , Vera Elizabeth , Wall Kathleen , Weathers Shiao-Pei , Wollet Alex , Arons David , Boccia Maria , Camphausen Kevin , Christ Alexa , Figuracion Karl Cristie , Gilbert Mark , Hervey-Jumper Shawn , Komlodi-Pasztor Edina , Lieberman Frank , Malkin Mark , Miller Hope , Paleologos Nina , Panzer Marissa , Stout Nicole , Wen Patrick , Beam Sarah , Boris Lisa , Fonkem Ekokobe , Jammula Varna , Kauss McKenzie , Kim Yeonju , Ozer Byram H , Pan Edward , Penas-Prado Marta , Pugh Stephanie , Strowd Roy , Tsien Christina , Wallgren Kimberly , Wu Jing , Zaghloul Kareem , Bell Susan , Chang Susan , Dunbar Erin M , Haynes Chas , Haynes Tuesday , King Amanda L , Lesser Glenn , Mayer Deborah , Maher Molly , Polskin Lily , Pillai Tina , Tonorezos Emily 
Published: February 2022

Background

Survivorship for those living with primary CNS cancers begins at diagnosis, continues throughout a person’s life, and includes caregivers. Opportunities and challenges exist to advance survivorship care for those living with primary CNS cancers that necessitate stakeholder involvement.

Methods

In June 2021, NCI-CONNECT convened a two-day virtual workshop about survivorship care in neuro-oncology. Two expert panels provided key recommendations and five working groups considered critical questions to identify strengths, weaknesses, opportunities, and threats to the advancement of survivorship care and developed recommendations and action items.

Results

The following action items emanated from the workshop: seek endorsement of meeting report from stakeholder organizations; address barriers in access to survivorship care and provider reimbursement; advance survivorship research through NIH and private grant support; develop a survivorship tool kit for providers, people living with primary CNS cancers and their caregivers; provide accessible educational content for neuro-oncology, neurology, and oncology community providers about survivorship care in neuro-oncology; and establish core competencies for survivorship care for neuro-oncology providers to be included in training and standardized exams.

Conclusions

Action items aim to address access and reimbursement barriers, expand patient and provider education, develop core competencies, and support survivorship research through funding and other supports.