Proceedings of the Survivorship Care in Neuro-Oncology Workshop sponsored by the Comprehensive Oncology Network Evaluating Rare CNS Tumors (NCI-CONNECT)

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

Research output: Contribution to journalArticlepeer-review

Abstract

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.

Original languageEnglish (US)
Article numbervdac029
JournalNeuro-Oncology Advances
Volume4
Issue number1
DOIs
StatePublished - Jan 1 2022

Keywords

  • NCI-CONNECT
  • patient-centered care
  • primary central nervous system cancer
  • survivorship
  • survivorship care

ASJC Scopus subject areas

  • Surgery
  • Oncology
  • Clinical Neurology

Fingerprint

Dive into the research topics of 'Proceedings of the Survivorship Care in Neuro-Oncology Workshop sponsored by the Comprehensive Oncology Network Evaluating Rare CNS Tumors (NCI-CONNECT)'. Together they form a unique fingerprint.

Cite this