Proceedings of the Survivorship Care in Neuro-Oncology Workshop sponsored by the Comprehensive Oncology Network Evaluating Rare CNS Tumors (NCI-CONNECT)
Author:
Leeper Heather E1ORCID, Tonorezos Emily2ORCID, Mayer Deborah3, Bakitas Marie4, Chang Susan5, Cooley Mary E6, Hervey-Jumper Shawn7, Miaskowski Christine8, Sherwood Paula9, Tsien Christina10, Wallgren Kimberly11, Willmarth Nicole12, Arons David13, Acquaye Alvina1, King Amanda L1, Penas-Prado Marta1, Vera Elizabeth1, Gilbert Mark R1, Armstrong Terri S1ORCID, 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,
Affiliation:
1. Neuro-Oncology Branch, Center for Cancer Research, National Cancer Institute, National Institutes of Health (NIH), Bethesda, Maryland, USA 2. Office of Cancer Survivorship, Division of Cancer Control and Population Sciences, National Cancer Institute, National Institutes of Health (NIH), Bethesda, Maryland, USA 3. School of Nursing and University of North Carolina Lineberger Comprehensive Cancer Center, University of North Carolina, Chapel Hill, North Carolina, USA 4. School of Nursing, Division of Geriatrics, Gerontology, and Palliative Care, Department of Medicine, UAB Center for Palliative and Supportive Care, University of Alabama, Birmingham, Alabama, USA 5. Division of Neuro-Oncology, Department of Neurological Surgery, University of California, San Francisco, California, USA 6. Phyllis F. Cantor Center in Nursing and Patient Care Services, Boston, Massachusetts, USA 7. Department of Neurological Surgery, University of California, San Francisco, California, USA 8. Departments of Physiological Nursing and Anesthesia and Perioperative Care, Schools of Nursing and Medicine, University of California San Francisco, San Francisco, California, USA 9. Department of Acute and Tertiary Care, School of Nursing, University of Pittsburgh, Pittsburgh, Pennsylvania, USA 10. Department of Radiation Oncology, Johns Hopkins Medicine, Baltimore, Maryland,USA 11. CERN Foundation, A Program of the National Brain Tumor Society, Zionsville, Indiana, USA 12. American Brain Tumor Association, Chicago, Illinois, USA 13. National Brain Tumor Society, Newton, Massachusetts, USA
Abstract
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.
Funder
National Institutes of Health National Cancer Institute Center for Cancer Research, Neuro-Oncology Branch
Publisher
Oxford University Press (OUP)
Subject
Electrical and Electronic Engineering,Building and Construction
Reference12 articles.
1. Living with a central nervous system (CNS) tumor: findings on long-term survivorship from the NIH Natural History Study;Rogers;Neurooncol Pract.,2021 2. The symptom burden of primary brain tumors: evidence for a core set of tumor- and treatment-related symptoms;Armstrong;Neuro-Oncol,2016
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