Background: Navigating a primary brain tumour (PBT) diagnosis often requires specialist support and care due to the unique, multifaceted and devastating impacts of the disease and its treatment. Neuro-oncology care coordination (NOCC) can mitigate these challenges by providing continuous and timely care tailored to individual needs. While NOCC is commonly based on nurse-led models of care, a lack of standardisation has created ambiguity in the roles and responsibilities of healthcare professionals (HCPs) involved in NOCC.
Aim: We aimed to compare formal position descriptions with the experiences and perceptions of HCPs involved in NOCC.
Methods: Semi-structured interviews were conducted with HCPs involved in clinical neuro-oncology care. Participants were asked about their perceptions of NOCC and asked, where possible, to provide a copy of their official position description. Interviews were transcribed verbatim and position descriptions converted to a standardised template, before undergoing qualitative thematic analysis. Necessary qualifications, key capabilities, roles and responsibilities were extracted and compared across the two datasets.
Results: We interviewed 12 HCPs from Australia and New Zealand and were provided with six position descriptions. The median interview length was 58 minutes and position descriptions varied in detail provided. Role and responsibilities were categorised into coordination, institutional, and resource-related duties. Coordination-related duties, multidisciplinary collaboration, referrals and clinical consultancy were commonly reported in interviews and position descriptions. In the interviews, almost all participants commented on their role as a key, trustworthy point of contact who provides emotional support and psychological first aid to patients and carers. However, only two position descriptions included providing psychological support as a key duty.
Conclusion: NOCC position descriptions are inconsistent across practice settings and fail to recognise the relational and emotional labour required as part of NOCC. Core duties of NOCC staff need review to ensure they reflect the components of care provided.