This blog post was written in partnership with the fantastic team at brainstrust, brainstrust are a UK-based charity dedicated to helping everyone with a brain tumour feel less afraid, less alone and more in control.
This week sees the launch of three reports about improving the speed at which brain tumours are diagnosed. The first is published by NCRI, the second by brainstrust and the third, Brain Tumours: Fighting for Faster Diagnosis, will be published by us tomorrow. Reading these three reports will enable you to have a better understanding of the complexity at play when it comes to diagnosing a brain tumour and why we’re advocating changing the narrative from early to faster diagnosis.
Each report shares a different perspective, but all are aligned in one aspect: that a faster diagnosis of a brain tumour does matter. And, while a faster diagnosis may not be significant for everyone, for some it can make all the difference. Even the language used (earlier, prompt, faster) is fraught with confusion and needs clarification.
For some cancers, it is important to acknowledge that an early diagnosis does save lives, as highlighted by an extensive 2015 review of whether increased cancer diagnosis times lead to poorer outcomes for patients. People diagnosed earlier with cancer, for example at stages one or two, are not only more likely to survive, but importantly they have better experiences of care, lower treatment morbidity, and improved quality of life compared with those diagnosed late, for example stages three or four. Efforts to improve earlier diagnosis of cancer are complex and multifaceted and have been at the forefront of international policy and charity (e.g. Cancer Research UK) initiatives for several years. The Faster Diagnosis Standard was introduced in October 2021 requiring that patients have cancer diagnosed or ruled out within a maximum of 28 days from referral. Cancer systems are required to meet this standard for at least three quarters (75%) of patients but we know they are often not hitting this target.
By talking about the early diagnosis of brain tumours in a similar way, the discourse loses so much of the nuance. And while the benefits do not necessarily lie in overall survival, it’s wrong to say there are no benefits to getting a faster diagnosis because there are so many and all are life changing.
If we can get the conversation right, it would settle better with the community that is affected by a brain tumour diagnosis – there would be less anger, more healing, less feeling out of control and more resilience.
What’s at play – the three reports
The three reports are a watershed; The Brain Tumour Charity’s Brain Tumours: Fighting for Faster Diagnosis reflect the views of the community, the NCRI piece reflects the clinical perspective and brainstrust’s think piece draws the threads of objectivity together. All have involved patients, their caregivers, clinical expertise, policy makers and evidenced-based research. Together, the reports explore the following issues:
- There are different definitions of what we mean by delay. Delay can be what the patient perceives to be delay (the patient interval) and clinical delay (the clinical interval).
- How the NHS systems are set up and what that means in terms of having a variety of ways to present with a brain tumour.
- Different ways of measuring the delay are confounded by the way patients give information and the questions they are asked, the data collected, missing data.
- People diagnosed with brain tumours are a small cohort with a wide range of subsets of tumours so comparison is difficult. This also makes it difficult to compare with other cancers.
- Brain tumours present and grow very differently. Low grade tumours will grow over time with more insidious changes; high grade gliomas can lead to a quicker diagnostic journey but with rapid progression. And then there’s also the location of the tumour in the brain that can mean very variable symptoms. This leads to people with a worse prognosis having a shorter diagnostic delay because they often end up in A&E.
- Measurement outcomes vary, and quality of life is a measure that is often secondary to overall survival. And yet it is the outcome measure that is most important to people and their caregivers.
Where are we aligned
In 2015 the UK-based James Lind Alliance published its list of the top 10 clinical uncertainties in neuro-oncology. Early diagnosis was identified as a priority
Does earlier diagnosis improve outcomes for people diagnosed with a brain tumour or spinal cord tumour?
This confirmed what was already known; that early diagnosis matters to people diagnosed with a brain tumour. But when it comes to whether people survive longer, it’s messy. Evidence is based on observational studies, so there is a lack of trial evidence (where an intervention is researched to reduce delays). There is a paucity of qualitative data, and an overwhelm of quantitive data so that we can make the data say what we want it to say. Confounding issues too mean that it is incredibly hard to find a definitive answer to this question, when focusing on survivability.
The bottom line is that there is no known direct link between a brain tumour being discovered earlier and a greater survival outcome. We, however, are agreed that the language of ‘early diagnosis’, which sits with the national agenda for other cancers, is misleading when it comes to a brain tumour diagnosis because of the connotations with survivability. We’re arguing for a shift in the discourse, which is fraught with confusion. We need to mark brain tumours out as different and worthy of focus despite the link not currently being there when it comes to survivability. We advocate that the word ‘early’ would become ‘faster’.
A faster diagnosis would mean that if you feel something is not right, then you have an appropriate examination and diagnosis (which may be ruling out a brain tumour) promptly. And we do know that there are benefits to a faster diagnosis for people with brain tumours, which you can read more about in this blog post.
Each of the three reports makes recommendations for change – for the policymakers in the Government and the NHS , for clinical service delivery and for everyone who is impacted by a brain tumour diagnosis. There needs to be:
- a new approach to diagnostics (that isn’t based on screening)
- research into faster diagnosis to establish whether changes to pathways and practice result in improvement in time to diagnosis, improved patient outcomes and health economics
- expansion in workforce and resources.
Together we will continue to push forward the work in this space. We can all make a start by referring to faster, rather than early diagnosis.
Want to help us fight for faster diagnosis times for brain tumours?
We’re calling on policy makers in Government and the NHS to help us make sure people experiencing symptoms of a brain tumour receive a diagnosis faster.
Join our group of passionate campaigners if you want to be part of our movement and help us create meaningful, lasting change!