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

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.

Keywords: NCI-CONNECT; patient-centered care; primary central nervous system cancer; survivorship; survivorship care.

Figure 1.

Preworkshop survey results analysis. A) List of three open-ended questions created for the survey and reporting of the number of respondents listed by self-identified roles. B) Thematic analysis results of healthcare provider, researcher, patient advocate responses to the question asking their opinion regarding the top three survivorship care issues faced by neuro-oncology patients. C) Thematic analysis results of patient and family member responses to the question asking their opinion regarding the top three survivorship care issues faced by people living with a brain or spine tumor and their loved ones. D) Thematic analysis results and word cloud derived from patient and family responses to what survivorship means to them.

Figure 2.

Workshop Agenda. (A) Event Day 1 symposium agenda featured expert speakers and panelists who provided foundational education and recommendations to advancing survivorship care and research. (B) Event Day 2 working group agenda included individual group discussion sessions with SWOT reports to the whole group and discussion of action items focused on research, guideline development and education goals with summary of next steps.

Figure 3.

Survivorship care models. A) Proposed model of survivorship care in neuro-oncology leveraging high-quality communication facilitated by survivorship care plans and use of patient-reported outcomes to achieve person-centered outcomes prioritized by neuro-oncology patients. Reprinted with permission. B) Cancer survivorship care quality framework featuring the five domains of individual patient factors corresponding to the workshop’s five working groups. Open use copyright.

Figure 4.

SWOT analysis matrix for assessing the advancement of survivorship care in neuro-oncology.

Figure 5.

Summary of workshop action items.