Pilot implementation of ICoPE: An innovative model to support patients with glioma and their carers across key care transitions

Abstract

The current study aims to conduct a pilot implementation and evaluation of an innovative model designed to support patients and their carers through transitions of care. The model involves the provision of Information, Coordination, Preparation and Emotional support (I-CoPE) over 3 key identified care transitions, for people newly diagnosed with primary malignant glioma (PMG) and their carers. I-CoPE is based on prior research conducted by our team which identified gaps in the early disease stages associated around times of care transition, when support was inadaquete. From these gaps in care, I-CoPE was defined which specifically aims to: 1) Provide remote monitoring and management for PMG patients who are likely to resort to acute hospital services for ongoing support; 2) Effectively institute a key care worker who can appropriately support the transition of the patient through acute hospital, ambulatory care and primary care settings; and 3) Focus and tailor support, information and education for patients’ carers to ensure they are able to engage in the primary health care process, enabling patients to remain in the community.

The study will collect key patient/carer outcome and health service utilisation data to assess the effectiveness of this innovative model which targets care transitions. If successful, the model has important implications for broader implementation into other patient groups with end stage diseases who also have complex care needs. Indeed general practitioners in primary care settings face the difficult challenge of supporting complex care needs of palliative care patients and their families, often with minimal support and sometimes nil prior exposure to rare disease trajectories such as in the case of PMG. Having strategic and focused communication with a care transition manager throughout the patients' care process, including individualised patient screening results which identify unmet care needs, is likely to enhance primary care management.