HCP-10INTEGRATED DISEASE MANAGEMENT FOR NEURO-ONCOLOGY PATIENTS AND THEIR FAMILIES: PUTTING PATIENT CENTRED CARE INTO PRACTICE

Abstract

BACKGROUND: The Cabrini Neuro-Oncology program was developed to facilitate integration and streamline patient care within a complex heath system. The program encompasses a continuum of care from diagnosis to bereavement. Care is delivered in acute, rehabilitation, outpatient, community and palliative care settings. Within this program the Neuro-Oncology Clinical Nurse Consultant works in collaboration with the neurosurgeon, neuro-Oncologist, allied health, rehabilitation and palliative care services to provide individualised specialist neuro-oncology care to patients and support to carers. In addition to outcomes, it is important to understand the experience of patients and families when evaluating programs. This study assessed the acceptability of the program and aimed to guide further service development. METHODS: Two focus groups were held. Three current patients, eight bereaved carers and one current carer participated in the focus groups. Qualitative focus group data was transcribed in full and analysed thematically using a constant comparison method of thematic analysis. RESULTS: Focus group data indicated that both patients and carers valued the service highly, particularly the patient centred approach that the program offers. Access to information and emotional support throughout the program was seen as invaluable. Other themes that arose included the need for intensive support following diagnosis and after bereavement, as well as support with service navigation and self-management. DISCUSSION: This integrated disease management approach, delivered by a multidisciplinary care team, has been designed to meet the specific needs of patients with primary brain tumours and provide support to them and their carers. The results indicate the benefits of integrated management throughout the continuum of care, highlighting how this approach impacts on the experiences of patients and carers. Further service development will streamline services to improve communication at point of diagnosis and support to carers in bereavement. Opportunities have been identified to provide enhanced and improved access to targeted information.