What constitutes optimal care coordination for primary brain tumors and how do we assess it in Australia and Aotearoa New Zealand? A Delphi consensus study

Background People with primary brain tumors (PBT) and their carers experience diverse issues and functional impairments, which can form barriers to accessing tailored healthcare. Care coordination (CC) addresses this dual challenge and is critical to achieving high-quality care for PBT. We aimed to develop a consensus framework and assessable quality indicators for optimal CC for PBT. Methods A two-phase, modified Delphi process was conducted. In Phase 1, a preliminary framework of 4 domains and 140 items was identified from a scoping review and expert stakeholder advisory group discussion (n=14). In Phase 2, multidisciplinary panel members (n=40) with expertise in clinical management and support for PBT indicated level of agreement (consensus criteria: ≥80% agreement and a median score of ≥4) on proposed items using a 5-point Likert scale. The expert stakeholder advisory group finalized components and indicators based on panel consensus findings. Results Consensus was achieved for 97/140 items across four domains (definition, objective, components and indicators), and a further 33 items approached consensus following two survey rounds. Panelist ratings on quality indicators for CC varied, especially for items related to indicators of healthcare system governance (range 48-79% agreement). The expert stakeholder advisory group finalized inclusion of six additional items based on feedback from panelists, producing a final list of 136 items. Conclusions We defined a novel framework of CC specific to PBT, which presents consensus-based definition and objectives for CC and comprehensive lists of components and quality indicators. The framework provides a useful template for developing models of CC.