Findings from a recent study published in Neuro-Oncology Practice demonstrate the desperate unmet needs faced by people with newly diagnosed glioblastoma (GBM) in the UK and their caregivers. It calls for a holistic approach to GBM treatment and management, with improved support for, and from, healthcare professionals.
The findings were discussed at a pivotal workshop, hosted by Novocure, at the European Association of Neuro-Oncology (EANO) annual meeting in Glasgow. Our Director of Research, Policy and Innovation, Dr Karen Noble, was invited to speak at the event about the challenges patients face in accessing clinical trials and treatments.
GBM is the most commonly diagnosed high-grade brain tumour in adults, with approximately 3,200 adults diagnosed in the UK every year. Only one in five patients survive beyond one year even with treatment; treatments which have not improved in two decades.
The study identified challenges associated with the coordination of GBM care among medical teams in the UK, with poor communication between healthcare professionals, delayed or inadequate access to care and treatment, and a lack of support if a treatment fails.
It highlighted that patients had limited access to new treatments and clinical trials due to a lack of suitable trials. Furthermore, there was a lack of information provided to patients from clinicians, and a lack of awareness among patients of what is available.
The paper stated: “Receiving a diagnosis of GBM is emotionally and psychologically challenging, and is associated with a lack of psychological support and information overload.”
Until now, there has been limited research undertaken in the UK exploring the patient perspective and lived experience of those with newly diagnosed glioblastomas. Through a series of panels and interviews with patients, caregivers, and patient advocacy groups, this study addressed these issues and identified the unmet needs of UK patients and opportunities to support them.
To ease the burden of GBM on patients and caregivers, the study makes three key recommendations, as set out in the graphic below, which it calls upon the Government to implement.
The most common route to a GBM diagnosis in the UK is through Accident and Emergency. As such, the study also recommends A&E specialists should receive enhanced education and training to support them to sensitively convey a new brain tumour diagnosis and make appropriate referrals.
The research was undertaken by MAP Patient Access, funded by Novocure, with input from patient advocacy experts from five brain tumour organisations in the UK, including Dr Noble on behalf of Brain Tumour Research.
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Published on Wednesday 23rd October 2024.
Updated on Friday 25th October 2024.