Managing the Complexities of Brain Tumour Survivors and the Late Effects of Treatment: A Novel Approach

Abstract AIMS With improving overall survival, follow-up services for adult brain tumour survivors are under increasing pres- sures. Adult services lag behind extensive literature and available support within paediatric/TYA services. In line with the NHS’ long-term plan to deliver personalised care for people living with cancer, a CNS led clinic was established with the aim to manage complex and varied late effects from brain tumour treatments. Data analysis aims to identify the complexities and variety of care needs within this patient group as well as quality-of-life (QoL) measurements to clarify whether such a clinic is a useful forum to manage survivors. METHODS Patients approached from current follow up pathway. EORTC QLQ-C30 questionnaires distributed from clinic. Additional questions specific to neuro-oncology added. Data collected from consultation documentation and blood results obtained. RESULTS 50 patients to date seen. Symptoms effecting QoL include fatigue, poor concentration, deteriorating mobility and low mood. All patients reported that their medical condition and physical function affected their social and family life. 92% stated they were unaware there were treatment related late effects. 96% stated they had not received a GP Cancer Clinical Review. Undiagnosed endocrine deficiencies were identified in 20%. 32% were re-referred to therapists. 20% were referred for psychological support. 12% were identified as high risk of stroke. 60% had undiagnosed osteopenia/osteoporosis. CONCLUSION Poor QoL was identified in almost all brain tumour survivors. Symptoms reported highlight a need for a struc- tured reengagement process for therapy input. The clinic identified undiagnosed medical conditions. Benefit- ing patients’ physical condition would improve QoL, ensuring patients are increasingly able to tolerate further treatment on progression, likely improving overall survival. The clinic provided a useful platform for patient education and health promotion. Ongoing data analysis would be useful to appreciate how this clinic can impact QoL over time. Screening all survivors would strengthen data.