Aim: People with primary brain tumours (PwBT) and their caregivers experience diverse issues across physical, cognitive, behavioural, and psychosocial domains. These impacts can create barriers to seeking care and support. While care coordination (CC) is a critical process to achieve high-quality care for PwBT, a framework of optimal CC to guide clinical practice is lacking. We aimed to develop a consensus framework and assessable indicators for the delivery of optimal CC for PwBT.
Methods: A two-phase, modified Delphi process was conducted from June 2023 to April 2024. In Phase 1, a preliminary framework of 4 domains and 140 items was identified from a scoping review and expert stakeholder advisory group (n=14) discussion. In Phase 2, multidisciplinary panel members (n=40) with expertise in clinical management and support for PwBT indicated the level of agreement (defined as ≥80% agreement and a median score of ≥4) on proposed items using a 5-point Likert scale against consensus criteria in a 2-round iterative Delphi survey. The expert stakeholder advisory group met to finalise components and indicators based on panel consensus findings.
Results: Consensus was achieved for 97 of 140 items across four domains of CC (definition, objective, components and indicators). A further 33 items approached consensus following the two survey rounds. Panel opinions about what indicates quality CC varied, especially for items related to performance indicators of governance/system (ranging between 48-79% agreement). The expert stakeholder panel finalised the inclusion of an additional six items based on qualitative feedback from panellists, producing a final list of 136 items.
Conclusions: We defined a novel framework of CC specific to PwBT. This presents consensus definition and objectives for optimal CC and a comprehensive list of components and indicators of quality CC. This provides a useful template for developing models of CC in the Australian clinical context.