In Brain News, Campaign News, Charity News, Research News

This week sees the launch of three reports [1][2][3] about early diagnosis of brain tumours. 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 are 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 [4]. People diagnosed earlier with cancer  i.e. stage 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. 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 [5] 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 [6].

By talking about the early diagnosis of brain tumours in a similar way, the discourse loses so much of the nuance. And whilst the benefits do not necessarily lie in overall survival, it is 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, more resilience.

 

What’s at play – the three reports

The three reports are a watershed; they reflect the views of the community [3], the clinical perspective [1] and a think piece which draws the threads together of objectivity together [2]. 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.

Click here to read the brainstrust report | Click here to read The Brain Tumour Charity Report | Click here to read the NCRI report

Where are we aligned

In 2015 the UK-based James Lind Alliance published its list of the Top Ten clinical uncertainties in neuro-oncology [7]. 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 quantitative 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 are 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 a ruling out) 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 report makes recommendations for change – for the policy-makers 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.

 

References:

[1] Position statement on early diagnosis of brain tumours: NCRI Brain Group March 2023

[2] Earlier, prompt or faster diagnosis of a brain tumour? brainstrust – the brain cancer people March 2023

[3] Brain Tumours: Fighting for Faster Diagnosis: The Brain Tumour Charity March 2023

[4] Neal RD, Tharmanathan P, France B et al. Is increased time to diagnosis and treatment in symptomatic cancer associated with poorer outcomes? Systematic review. Br J Cancer. 2015; 112: S92-S107

[5] https://www.england.nhs.uk/cancer/faster-diagnosis/accessed 27 Mar. 2023)

[6] https://www.bbc.co.uk/news/health-64876835 accessed 27 Mar. 2023)

[7] ‘Neuro-oncology’, James Lind Alliance, https://www.jla.nihr.ac.uk/priority-setting-partnerships/neuro-oncology, accessed 17 Mar. 2023

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Introduction

The Brain Tumour Data Dashboard lets you explore up -to-date, population level data about the brain tumours diagnosed in England between 2013 and 2015. Using the drop down menus on the left you can select different groups of patients to view in the charts below. In these charts the number of patients for every 100 diagnoses is displayed as images of people. Patients have been grouped by date of diagnosis, type of tumour, age, gender, and region in England.

For each group of patients you can explore the different routes to diagnosis, the proportion of those who received chemotherapy or radiotherapy, as well as the survival of the patients within each group. For more information about what these metrics mean please see the glossary.

How to use

  1. Select the year of diagnosis using the drop down menu.
  2. Select your patient group of interest from the four drop down menus in the following order:
    1. Tumour group
    2. Age at diagnosis
    3. Region of England
    4. Gender of patient
  3. To view a second chart to compare different groups of patients, click the ‘compare’ button.The second chart will appear below the first chart.

*Note that the tool is best used on a laptop or tablet rather than a mobile phone*

Unavailable data

Some of the data in these charts is not available.There are two main reasons for this:

  1. How the data has been grouped

If you cannot select a patient group from the drop down menus, the data is unavailable because of how the data has been organised.

Public Health England has grouped the data like a branching tree. The bottom of the tree contains all the patients with brain tumours, and then each branch divides the data by a certain characteristics, like age, or location of tumour. But the data is divided in an order, starting with location of the tumour (endocrine or brain), then by age, region, and gender. Age is at the start because it makes a bigger difference to survival rates and treatment rates than gender or region. Sometimes, after the data has been split by type of tumour and age, there is not enough data to be split again. This is because to protect patient confidentiality groups cannot contain less than 100 patients. Because some groups cannot be split further, you cannot create ‘totals’ for everyone by region or gender. For example, you cannot see results for all ages by region, or all brain tumours by gender. If these totals were calculated and released, it might be possible to identify patients, which is why Public Health England cannot release this data.

  1. Statistical reasons and data availability

If you can select a patient group from the chart menus, but the chart does not display, the data is unavailable for one of several reasons:

  1. Data is not yet available for the selected year from Public Health England.
  2. Data is not available because the data quality is too poor to release this statistic.
  3. Data is not available as the statistic is not appropriate for this group.
  4. Data is not available because the standard error of the estimate was greater than 20% and so the estimate has been supressed.

Up to date brain tumour data

Brain tumour data may influence the decisions you make about your care. Data also helps you understand the bigger picture, or landscape, in which you find yourself.

Brain tumour data and statistics influence the focus, and work of organisations like brainstrust. The information helps us to understand the scale and impact of the problems we are setting out to solve.

This tool helps you understand the landscape in which you find yourself having been diagnosed with a brain tumour. This landscape can be particularly tricky to navigate as there are many different types of brain tumour, all of which have a different impact.

The information you see represents the most up-to-date, official, population level brain tumour data available for England. Over time we will be adding to the brain tumour data available and publishing reports, with recommendations, as a result of what we learn from this data.

The data behind this content has come from Public Health England’s National Cancer Registration and Analysis Service (NCRAS) and is a direct result of the ‘Get Data Out’ project.

This project provides anonymised population level brain tumour data for public use in the form of standard output tables, accessible here: http://cancerdata.nhs.uk/standardoutput

Incidence

The number or rate (per head of population) of new cases of a disease diagnosed in a given population during a specified time period (usually a calendar year). The crude rate is the total number of cases divided by the mid-year population, usually expressed per 100,000 population.

Malignant

Malignant tumours which grow by invasion into surrounding tissues and have the ability to metastasise to distant sites

Mortality

The number or rate (per head of population) of deaths in a given population during a specified time period (usually a calendar year). The crude rate is the total number of deaths divided by the mid-year population, usually expressed per 100,000 population.

Non-malignant

Not cancerous. Non-malignant tumours may grow larger but do not spread to other parts of the body.

Survival

The length of time from the date of diagnosis for a disease, such as cancer, that patients diagnosed with the disease are still alive. In a clinical trial, measuring the survival is one way to see how well a new treatment works. Also called ‘overall survival’ or ‘OS’.

Routes to Diagnosis

Under the ‘Routes to Diagnosis’ tab in the Brain Tumour Data Dashboard, you can explore the ways patients have been diagnosed with brain tumours. There are many ways, or routes, for cancers to be diagnosed in the NHS. A ‘route to diagnosis’ is the series of events between a patient and the healthcare system that leads to a diagnosis of cancer. The routes include:

  1. Two Week Wait

Patients are urgently referred by their GP for suspected cancer via the Two Week Wait system and are seen by a specialist within 2 weeks where they are diagnosed.

  1. GP referral

Diagnosis via a GP referral includes routine and urgent referrals where the patient was not referred under the Two Week Wait system.

  1. Emergency Presentation

Cancers can be diagnosed via emergency situations such as via A&E, emergency GP referral, emergency transfer or emergency admission.

  1. Outpatient

Outpatient cancer diagnoses include diagnoses via an elective route which started with an outpatient appointment that is either a self-referral or consultant to consultant referral. (It does not include those under the Two Week Wait referral system).

  1. Inpatient elective

Diagnosis via an inpatient elective route is where diagnosis occurs after the patient has been admitted into secondary care from a waiting list, or where the admission is booked or planned.

  1. Death Certificate Only

Diagnoses made by Death Certificate Only are made where there is no more information about the cancer diagnosis other than the cancer related death notifications. The date of diagnosis is the same as that of the date of death.

  1. Unknown

For some patients with a cancer diagnosis, there is no relevant data available to understand the route to diagnosis.

 

More information

If any of the statistical terms in this section of the brainstrust website are hard to understand, we recommend looking them up here:

Cancer Research UK’s Cancer Statistics Explained

http://www.cancerresearchuk.org/health-professional/cancer-statistics/cancer-stats-explained/statistics-terminology-explained#heading-Seven

If you are looking for help understanding terms relating specifically to brain tumours, and treatment, then the brainstrust glossary is available here:

https://www.brainstrust.org.uk/advice-glossary.php