BACKGROUND People with primary brain tumours (PwBT) and their families expereince high distress and face challenges navigating the disease, healthcare system, treatment, and/or survivorship. Coordination of care is an approach to achieving continuous, timely care according to individual care needs of PwBT. Within the Brain Cancer Rehabilitation, Assessment, Interventions for Survivorship Needs (BRAINS) program, we aimed to explore healthcare professionals’ (HCPs) practices and perceptions about neuro-oncology care coordination (NOCC).

MATERIAL AND METHODS We conducted a qualitative study using semi-structured interviews via videoconferencing. Participants were HCPs involved in clinical neuro-oncology care. Interviews were audio-recorded and transcribed verbatim. Data were analysed thematically using interpretive description, following COREQ guidelines for conducting and reporting qualitative research.

RESULTS We interviewed 12 HCPs from Australia and Aotearoa New Zealand between June and November 2023. The median interview duration was 58 minutes. Participants had a median of 13 years of clinical experience in neuro-oncology across medical, nursing, and allied health disciplines. NOCC models were not standardised. Often they were not clearly established and depended on HCPs’ knowledge, experience, and skillsets for triaging care or managing advanced illnesses. HCPs typically oversaw NOCC in either the neurosurgical or oncology care phases but not both. We identified five themes related to NOCC as perceived by HCPs: 1) Vulnerable and complex: PBT is a unique cancer generating pervasive, multifaceted disabilities; 2) Tailored coordination: Shaping and tailoring NOCC is in the best interests of PwBT and families; 3) Unfunded support: Care needs warrant unfunded proactive support; 4) Role limitations: Limited resources impact HCPs’ capacity to deliver the optimal standard of care; and 5) Emotionally demanding: HCPs manage emotional weight with limited support.

CONCLUSION PwBT experience a unique and complex set of care needs requiring specialist skills and knowledge beyond general oncology care coordination. NOCC encompasses continuous coordination of multidisciplinary care to optimise functional living for PwBT. Recognising the NOCC role in managing a vast array of issues, better support infrastructure with training and resources for HCPs is needed to retain HCPs and prevent burnout, which will provide greater access to NOCC for PwBT and carers. The findings will inform further research to identify support, training and resource needs for HCPs and implement appropriate interventions.

FUNDING The study is funded by the MRFF Australian Brain Cancer Mission Brain Cancer Survivorship Grant.