Palliative care exists to improve the quality of life and functioning of patients, rather than to cure disease. Patients with brain tumours often have complex palliative care needs that are quite unlike other cancers and life-limiting conditions. The World Health Organisation (WHO) definition of palliative care states that it “uses a team approach to address the needs of patients and their families”, yet to date there have been no widely accepted palliative care guidelines for brain tumour patients.
A multidisciplinary palliative care task force of the European Association of Neuro-Oncology (EANO), of which the IBTA’s director Kathy Oliver is a member, has compiled guidelines for palliative care in adults with glioma, which are published in the latest issue of the journal The Lancet Oncology.
Work on the guidelines began in 2015 and the Pan-European task force includes stakeholders in glioma care, as well as clinicians and academic researchers in addition to patient advocacy organisation representatives (including the IBTA and brainstrust). A systematic review of published literature revealed 251 studies that had findings relevant to palliative care in glioma and primary brain tumours. These were analysed and the resulting guidelines have summarised and consolidated these research findings to provide evidence-based guidelines for palliative care in adult patients with glioma, with the overall aim of improving the quality of palliative care, particularly in the final stage of disease. Where no studies existed on a particular topic, expert opinion from the task force was incorporated into the guidelines.
The guidelines give recommendations for the management of symptoms arising from glioma, including pain and headache, seizures, venous thromboembolism, fatigue, cognitive difficulties, rehabilitation for neurological deficits, and behavioural and mood disorders, such as depression. The review acknowledged that the psychosocial effects of glioma and its treatment can be profound and can substantially affect both patients and their caregivers. Recommendations are given for addressing these specific needs in addition to issues and symptoms arising during the end-of-life stage (such as delirium).
The guidelines stress that palliative care should not be confined to the end-of-life phase, but should cover the entire disease trajectory from diagnosis and initial tumour treatment until death. The WHO defines palliative care as being “applicable early in the course of illness, in conjunction with other therapies that are intended to prolong life”.
The IBTA and the other authors of these guidelines hope that they will serve as a “roadmap” for clinicians managing adult patients with glioma. The paper concludes that there are several areas of palliative care in glioma that are in need of further research and that an active palliative care culture within the neuro-oncological community, as well as collaborative research networks, should further enhance the quality of palliative care for patients with glioma and their families.
The paper ‘European Association for Neuro-Oncology (EANO) guidelines for palliative care in adults with glioma’ is available from The Lancet Oncology website here (subscription or payment required). If you would like to find out more about the paper, please contact Kathy Oliver at firstname.lastname@example.org or email@example.com.