Background For people with primary brain tumors (PBT) and their carers, care coordination (CC) offers comprehensive, timely, person-centered care. This review aimed to systematically scope the breadth of literature relevant to approaches to CC for PBT.

Methods Four databases were searched (PubMed, PsycINFO, EMBASE, & CINAHL) for empirical research, and grey literature searched for doctoral theses, clinical guidelines, and education resources for healthcare professionals (HCPs) related to the concept/model of CC in neuro-oncology. Data were systematically evaluated and synthesized following PRISMA-SCR guidelines.

Results From 1,163 screened abstracts, 30 eligible reports were reviewed (13 addressed CC interventions, 9 narrative reports, 5 describing CC/navigator positions, and 3 clinical guidelines). Most reports described nurse-led models of care within single tertiary care centres in metropolitan settings: a single HCP acting as primary contact, educator, and liaison, screening patient/carer distress and providing referrals as key components of CC. Clinical guidelines emphasise healthcare system navigation and access to medical care in CC. A CC approach overseeing the whole PBT trajectory was lacking. Facilitators of CC included availability of HCP dedicated to CC; HCPs’ competency in relationship-based and communication skills; and improved access to resources. System-level and resource barriers to CC were identified.

Conclusions Knowledge about CC is largely based on descriptions of nurse-led models of PBT care. Further research is required to refine the framework of CC reflecting factors of known importance in PBT care, and identify training and support needs of HCPs who may play a pivotal role in current models of neuro-oncology CC.