In Brain News, Brain Tumour Data, Research News

NHS Digital has just published the latest figures on cancer survival in England. This data includes all adults and children diagnosed with cancer and gender, geography and deprivation from 2015 – 2019. Not all the data references brain cancer.

Just a word about where this data has come from: in October 2021, responsibility for the National Disease Registration Service (NDRS) transferred from Public Health England (PHE) to NHS Digital. NHS Digital is the data controller for this data. The National Cancer Registration and Analysis Service (NCRAS) as part of the NDRS is still responsible for collecting data on patients with cancer in England and continues to produce the cancer statistics publications. 

What are the key messages for brain cancer? 

Bottom line is that, as we’d expect, there is very little difference for adults diagnosed with a glioblastoma, the most aggressive of brain tumours. One year survival hovers around 41% (which is an improvement) whilst 5 year survival is low at 12.5%. The one year survival may be down to better neurosurgical techniques such as 5ALA and neurosurgical imaging techniques, but we don’t have the evidence at the moment. Women tend to do better than men (14% v 11% at five years) – but we don’t know why.  

The data for children tells a different story. Childhood cancers accounted for 0.3% of all new cancer diagnoses registered in 2019 with the majority of cases being either leukaemia, malignant brain tumours  or non-Hodgkin lymphoma. Whilst we don’t have the breakdown to show what percentage of children have a ten year survival after diagnosis, 81.7% do – this is the highest percentage since data has been collected (2002). 

Why is a glioblastoma (GBM) so difficult to treat?

This is such a simple question to ask but it is very complex to answer. And that is because there are many reasons, some of which are outlined here. As ever, these are generalisations and not all of these points apply to all GBMs. So please remember that the more we know about these tumours, the more personal and targeted the treatments can be – that is why we need the research to optimise the treatments. And we need to explore the barriers so that we can remove them. It may be that we never find a cure, but I think most of us would accept living a long life with a GBM and a good quality of life for many years. 

Surgery 

GBMs are especially hard to treat because they aren’t contained in a defined mass with clear borders. Instead, the tumour includes thread-like tendrils that extend into nearby areas of the brain. This means it is impossible to remove all of the cancer cells and so the tumour will recur. And of course – the brain is a delicate and privileged site. It controls our very being so you can’t take a margin of tissue in the hope that you have all of the cancer cells. The damage would be too great.  

Chemotherapy 

There is a unique barrier around the brain (the blood brain barrier). This is there to protect the brain. So trying to get drugs through this barrier is hard. It limits the passage of molecules from the bloodstream to the brain. In addition, we know that some cancer cells are resistant to chemotherapy, or the cancer cells change over time and become more resistant. This is why when a GBM recurs it doesn’t have the same make up as when it first appeared. The tumour evolves and then has an advantage, as we don’t have drugs further down the line to use when it comes back.  

Other drug therapies 

It is thought that individual treatment agents are going to fail because the tumour develops multiple pathways that need to be stopped at the same time. So working out which combinations of drugs, when to deliver, how to deliver and to whom adds considerable complexity.  

Data 

On the one hand we need data to be able to do the research, but data can also confound research. The data sets we have (which are managed by the NDRS) are amongst the best in the world – but this too can bring challenges. We are data rich but information poor; it’s how we use it so that it is meaningful and changes practice for the better that is key. Data can change things – if we ask the right questions.

To really make data work so that it is transformative for research into GBM we need to: 

  • Understand the range and scope of data that exists 
  • Break down the silos that bind data  
  • Understand better data security and the risks that surround this. Sometimes the discussion will be around risk v benefit 
  • Develop the technological infrastructure so that it works seamlessly for us 
  • Stop regarding data as a propriety asset.  

What else makes it hard to treat a GBM? 

Well, small cohorts of people. Brain cancer is a less common cancer (rather than a rare cancer). But this means that we don’t have large numbers of patients to support a trial and so accrual to trials is a challenge. The recent World Health Organisation re-categorisation of brain tumours is a step in the right direction in that we know that there are subsets of tumours types, but this too makes it hard to have larger cohorts of patients involved in trials.  

And then there are the trials themselves. Sometimes they aren’t rigorous enough, they lack public and patient involvement, they take too long to set up, they aren’t relevant for the community, they don’t reflect value for money. There are many reasons why trials don’t get funded. At the moment COVID 19 has caused a hiatus – clinicians have been hard pushed to manage current patient load without thinking about research and any research bids have been COVID 19 focused. 

A good research question has to: 

  • Be important to the NHS and its patients 
  • Be supported by current evidence 
  • Have no overlapping studies in progress
  • Be of high scientific quality 
  • Be feasible – it has to work 
  • Be timely – it will be relevant when the study is finished 
  • Be clear and well defined. It has to ask what is the population, what is the intervention, what is the comparator and finally the outcome
  • Represent value for money.  

That’s a lot of boxes to tick.  

 

If you would like to use your experience and insight to support clinical research, consider signing up to be a PRIME advocate for brainstrust.

If you or someone you love is living with a brain tumour and have any questions around this latest news, or want to access support, give us a call on 01983 292 405 or email hello@brainstrust.org.uk. You can also visit our little brainstrust website which features support for children affected by brain tumour.

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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