PATIENTS’ EXPERIENCE OF THE NEURO-ONCOLOGY JOURNEY: INTERIM ANALYSIS OF A SINGLE-CENTRE EVALUATION AND RECOMMENDATIONS

Abstract AIMS To evaluate the patients’ experience and perception of the neuro-oncology diagnostic and treatment journey. METHODS A retrospective cross-sectional survey was provided to adult patients (aged>16 years) with a diagnosis of a high- grade glioma, recruited from the outpatient neurosurgery and oncology clinics. The survey was administered alongside a short, structured interview. Baseline data on age, gender, lesion type and location and treatment received to date was collected. This is an interim analysis with a target recruitment of 40 patients. RESULTS 21 patients (10 females) were recruited with a median age of 53 (43-62) years. Glioblastoma multiforme was the most common entity (n=17) followed by IDH-mutant astrocytoma (n=3) and oligodendroglioma (n=1). Five patients were recruited at the point of diagnosis, whilst the remaining cohort had progressed to oncological treatment. Patients at our institution see the same Consultant Oncologist, but the Neurosurgeon and neuro-oncology Clini- cal Nurse Specialist (CNS) may vary. Despite valuing being under the care of the same Consultant Neurosurgeon, 12 patients (60%) prioritise surgery timing, whilst 8 (40%) prefer the Neurosurgeon they met during the clinic perform the surgery if it meets national target times, with no difference between point of diagnosis or oncolog- ical follow-up (p=0.447) All patients greatly valued the input provided by the CNS team, and 13 patients (61%) would prefer being accom- panied by the same CNSs to both neurosurgery and oncology appointments to minimise the need to re-explore their journey regularly. Patients highlighted the anxiety of receiving a brain tumour diagnosis, and the CNS team were consistently available to provide further clarification, address concerns, and provide consistency in patients’ journeys. CONCLUSION This interim analysis highlighted patients’ preference for early surgery over operator and the role CNSs plays in their follow-up and care. However, we understand that each journey is unique, as are patients’ preferences.