Aim
People with primary brain tumours (PwBT) and their families experience high distress and face challenges navigating their disease and treatment, the healthcare system, and/or survivorship. Quality care coordination enables continuous, timely care according to the individual care needs of PwBT. We aimed to explore healthcare professionals’ (HCPs) practices and perceptions about neuro-oncology care coordination (NOCC).
Methods
We conducted a qualitative study using semi-structured interviews via videoconferencing. Participants were HCPs providing neuro-oncology care. Interviews were audio-recorded and transcribed verbatim. Data were analysed thematically using interpretive description, following the Consolidated Criteria for Reporting Qualitative Research.
Results
We interviewed 12 HCPs from Australia and New Zealand between June and November 2023. The median interview duration was 58 minutes. Participants had a median of 13 years of experience in neuro-oncology across medical, nursing, and allied health disciplines. NOCC models were not standardised. We identified five themes related to NOCC: 1) Vulnerable and complex PwBT and families: 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) Going the extra mile: Care needs warrant proactive support, which is often unfunded to mitigate crisis; 4) Emotionally demanding: HCPs manage emotional weight with limited support; and 5) Barriers to effective care: Limited resources impact HCPs’ capacity to deliver the optimal standard of care.
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. Given the complexity of the NOCC role, better support infrastructure with training and resources for HCPs is needed to retain HCPs and prevent burnout. These findings will inform further research to identify support, training and resource needs for HCPs and implement appropriate interventions.