Heather E Leeper1, Emily Tonorezos2, Deborah Mayer3, Marie Bakitas4, Susan Chang5, Mary E Cooley6, Shawn Hervey-Jumper7, Christine Miaskowski8, Paula Sherwood9, Christina Tsien10, Kimberly Wallgren11, Nicole Willmarth12, David Arons13, Alvina Acquaye1, Amanda L King1, Marta Penas-Prado1, Elizabeth Vera1, Mark R Gilbert1, Terri S Armstrong1. 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
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. Published by Oxford University Press on behalf of the Society for Neuro-Oncology and the European Association of Neuro-Oncology 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. Published by Oxford University Press on behalf of the Society for Neuro-Oncology and the European Association of Neuro-Oncology 2022.
Entities:
Keywords:
NCI-CONNECT; patient-centered care; primary central nervous system cancer; survivorship; survivorship care
Authors: Jennifer L Helfer; Patrick Y Wen; Jaishri Blakeley; Mark R Gilbert; Terri S Armstrong Journal: Neuro Oncol Date: 2016-03 Impact factor: 12.300
Authors: Heather E Leeper; Alvina A Acquaye; Susan Bell; Jennifer L Clarke; Deborah Forst; Nadia N Laack; Michael J Link; Jennie W Taylor; Terri S Armstrong Journal: Neurooncol Pract Date: 2018-01-11