By Eve Flynn
Posted Terri’s story
Five years ago, Terri’s son, Gary, was diagnosed with an aggressive GBM4 brain tumour. Feeling overwhelmed, Terri contacted places she felt could offer her family support. In her time of [...]
Five years ago, Terri’s son, Gary, was diagnosed with an aggressive GBM4 brain tumour. Feeling overwhelmed, Terri contacted places she felt could offer her family support. In her time of [...]
Time to travel? This Brain Tumour Awareness Month, Hayley has shared her story with us. Since her diagnosis aged 21, she’s been determined to not let her brain tumour stop her getting on [...]
Our vision is for everyone with a brain tumour to feel less afraid, less alone and more in control.
From April 1st 2018 your support has helped:
1017 New people access coaching via our 24/7 helpline
694 people receive a Brain Box (our support tool kit)
263 people attend a Meet Up
30,000 people use brainstrust’s accredited online information and support
2351 members of our online community helping each other to feel less alone, less afraid and more in control.
“This note is to say ‘Diolch o galon’ (thanks from our hearts). We are so proud of you – you don’t know us yet we lean on you, you have no obligation to help us but you do, and every time we feel down, you inspire us to keep on fighting.” – brain tumour carer, Wales.
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:
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.
Diagnosis via a GP referral includes routine and urgent referrals where the patient was not referred under the Two Week Wait system.
Cancers can be diagnosed via emergency situations such as via A&E, emergency GP referral, emergency transfer or emergency admission.
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).
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.
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.
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
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
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
*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:
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.
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:
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
If you need help using, or understanding this tool, or want help on living life with a brain tumour,
then please feel free to call brainstrust on 01983 292 305, or email hello@brainstrust.org.uk