In Brain News, Research News

We are first and foremost a brain tumour support organisation, but we know that good support stems from strong evidence. With this in mind, we work to embed patient experience and insight into clinical brain tumour research. Recently, we have been supporting a team of researchers on the BRAINatomy study; this aims to improve the outlook for children with a brain tumour.

About BRAINatomy

The BRAINatomy study, led by the University of Manchester in collaboration with the St Jude Children’s Research Hospital (USA) and University of Groningen (Netherlands), aims to improve brain tumour treatments for children by learning which specific regions of the brain should be avoided during radiotherapy treatment. The research is led by Dr Martin McCabe in Manchester and Professor Tom Merchant at St Jude, and is funded by Stand Up to Cancer and Cancer Research UK through the SU2C – CRUK Pediatric Cancer New Discoveries Challenge along with support from brainstrust for patient involvement and engagement.

How the research works

Precision radiotherapy is currently an essential part of the treatment of many paediatric brain tumours. However, even with improvements in the targeting of the radiation, these treatments can still cause lifelong side effects on cognition and hormone production. The BRAINatomy team is proposing to study the path the radiation travels in treating paediatric brain tumours, comparing pre- and post-treatment in order to link brain regions to long term side effects.

This project will allow the team to identify the healthy regions of the brain that are sensitive to radiation and involved in cognition and hormone production. This will develop an atlas of brain regions to be avoided during radiotherapy.

The role of brainstrust and patient involvement and engagement

brainstrust has worked alongside the BRAINatomy team to support the study goals and provide a patient focused perspective throughout the trial design. This ensures that patient experience, insight and perspective are reflected in all stages of the trial.

Two patient representatives, Josh and James, have shared their perspective and experience since being diagnosed with brain tumour at an early age. This kind of insight is invaluable in guiding research teams to consider how best to approach patients to participate in trials and new studies in the future and how to prioritise their needs during such a difficult time in their lives.

Without strong patient involvement and engagement, a trial like this may not get the funding it needs to help the community as effectively as it can. This is why brainstrust puts a focus on making patient involvement standard practice in the clinical research landscape.

Ricky shares his family’s story

Ricky has been in touch with brainstrust for support and guidance throughout his family’s journey since his son was diagnosed with a brain tumour. Now, he is helping to put a spotlight on why this kind of research is essential by sharing his family’s story and what it meant to them to receive great care:

“Not long after Alexander’s 11th birthday, an ambulance was called to take our son to hospital having had a mild seizure, losing and gaining consciousness. Prior to being taken to hospital he was complaining of headaches and vomiting. This we assumed was another one of those school bugs doing the rounds.

I left work early Friday afternoon and rushed to the local hospital where we were taken to a room to be given the type of news every parent dreads to hear. A CT scan had shown a mass in the brain which was identified as a brain tumour. The local hospital arranged for him to be urgently rushed to Gt Ormond St to have the pressure relieved on his brain which was causing the symptoms. The next few days our world came crashing down around us. So many things were going around in our minds which basically reduced us to tears over and over.

After 3 days the doctors gave us some positive news and informed us the tumour was low grade. Following surgery to remove part of the tumour, we were offered either proton beam therapy or chemotherapy.

We discussed treatment options and weighed up the pros and cons of both with Gt Ormond St and at the time we were leaning towards proton beam therapy. We decided to attend a brainstrust symposium and spoke to experts and parents at the event to get their opinions of the treatments offered. This helped us to choose chemotherapy as it was clear the radiation leak in a young brain was potentially very damaging.

Alexander has now completed 18 months of chemotherapy, with a few operations and many tests along the way. It has been very stressful at times, but he has had amazing care from Gt Ormond St. and his local hospital. We’ve also had great support from brainstrust so we feel blessed and fortunate to get to where we are today. There will be more tests and scans coming for the foreseeable future, but Alexander continues to do well.”

The BRAINatomy team want to make sure that any child who has the misfortune of a brain tumour diagnosis has the best chance of a positive outcome post-radiotherapy by limiting damage to the brain and to cognition. This will improve their quality of life and reduce stress, anxiety and fear for both them and their loved ones.

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