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
Neuro-Oncology Branch, Center for Cancer Research, National Cancer Institute, National Institutes of Health (NIH), Bethesda, Maryland, USA.
Office of Cancer Survivorship, Division of Cancer Control and Population Sciences, National Cancer Institute, National Institutes of Health (NIH), Bethesda, Maryland, USA.
Neurooncol Adv. 2022 Feb 28;4(1):vdac029. doi: 10.1093/noajnl/vdac029. eCollection 2022 Jan-Dec.
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.
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.
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.
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.
原发性中枢神经系统癌症患者的生存之旅始于诊断，贯穿一生，且涉及护理人员。对于原发性中枢神经系统癌症患者而言，推进生存护理存在诸多机遇与挑战，这需要利益相关者的参与。
2021年6月，美国国立癌症研究所连接组学项目（NCI-CONNECT）举办了一场为期两天的关于神经肿瘤学生存护理的虚拟研讨会。两个专家小组提出了关键建议，五个工作组审议了关键问题，以确定推进生存护理的优势、劣势、机遇和威胁，并制定了建议和行动项目。
研讨会产生了以下行动项目：寻求利益相关者组织对会议报告的认可；解决生存护理获取和提供者报销方面的障碍；通过美国国立卫生研究院（NIH）和私人资助支持推进生存研究；为提供者、原发性中枢神经系统癌症患者及其护理人员开发一个生存工具包；为神经肿瘤学、神经病学和肿瘤学界的提供者提供关于神经肿瘤学生存护理的易获取教育内容；并为神经肿瘤学提供者建立生存护理的核心能力，以便纳入培训和标准化考试。
行动项目旨在解决获取和报销障碍、扩大患者和提供者教育、发展核心能力，并通过资金和其他支持来支持生存研究。
