We’ve just returned from the European Association of Neuro-Oncology Conference 2018 where we were delighted to share our work on the brain tumour data dashboard and we had the floor for an hour talking about managing patient expectations. We explored where our expectations come from, how we can manage them and left clinicians with some tools to use to help them better manage expectations of the patient and caregiver.
As ever clinical developments in treating brain tumours are a focus for this conference – but as ever, there is little new to report on this front. brainstrust’s focus at EANO was on quality of life. This is where we can have the most impact. So the EANO task force meeting about palliative care, where brainstrust represents patient and caregiver voice, was a jewel in the crown.
Patients affected by gliomas have complex palliative care needs throughout their disease trajectory. The palliative care task force has reviewed all of the scientific literature available so that we have now made evidence-based recommendations on palliative and supportive care for adult glioma patients. The goal of this is to improve the quality of palliative care, particularly in the last stage of disease. Where recommendations could not be made because of lack of evidence, expert opinion was given. Next steps are to look at the challenges of mental capacity when making decisions about palliative and end of life care.
Managing behaviour and personality change too was a focus as we are involved with the EANO task force. Research we have done on what matters to patients and caregivers is being developed and expert opinion about how to manage challenging behaviours is being woven into this work. Watch this space!
Finally, brainstrust is delighted to have been elected to the Education Committee of EANO. And we will too be playing an active role in planning EANO 2019 – in Glasgow!
You can view the guidance from the palliative care task force here
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