In Brain Tumour Data, Charity News, Uncategorized

Recently released brain tumour data shows that 10% of people with a non-malignant brain tumour will die within the first year of being diagnosed.

Despite this, these tumours are referred to as benign, there is little public understanding of the impact that these tumours have, very little information, and supportive services are not stratified appropriately for those with a non-malignant brain tumour.

Low grade brain tumours: the impact

Helen Bulbeck, Director of Services and Policy at brainstrust highlights the challenges that face people living with a low grade brain tumour:

“People living with a low grade brain tumour, and their loved ones, face a multitude of challenges. These include varying survivorship (now evidenced by government data); uncertainty and anxiety about the future, compounded by regular scans and the fear that comes with those; high frequency of disabling complications; and high severity of disabling complications. We also know that people are concerned about vitality, their identity and role, limitations and emotional well-being. Practical support can help here, but it is not easy to find and there is not enough capacity and understanding to make meaningful population-wide change”

To compound this further, there is a social issue at play wherein people with a non-malignant brain tumour and their caregivers do not have parity of voice with those diagnosed with a malignancy.

The story behind the data
Report 1: Non-malignant brain tumours (NMBTs)

brainstrust has published a report that explores and explains the data. It also shines a spotlight on the experiences that people are having in the face of a low grade brain tumour diagnosis, and makes recommendations on what needs to be done for people with a non-malignant brain tumour to have a better life with the disease.

These recommendations include:

  • The word ‘benign’ should not be used to describe these brain tumours
  • There is a need for better public understanding, resources and information to support people with a low grade brain tumour
  • More support is needed and it needs to be better structured
  • Support needs to be relevant, available at the right time
  • There needs to be parity of voice between non-malignant and malignant brain tumour patients and their carers.

To read the report on low-grade brain tumours, and what needs to be done click here.

Stories behind the data

Claire was diagnosed with a grapefruit-sized meningioma following constant migraines, trembling hands and trouble finding words. Her dreams for the future are now different, but no less ambitious as she comes to terms with her new normal.

Read more about Claire’s experiences here.

Following prompt diagnosis in early 2017, Natasha is having to focus on the short term future with variable seizures and the medication that comes alongside, as well as weighing up the pros and cons of brain surgery. The ‘what if’ feeling can be overbearing and she is working hard to overcome this. Every day questions like ‘How are you?’ or ‘What’s new?’ are hard to handle.

Read more about Natasha’s story here.

What is brainstrust’s role, and how can you help?

Will Jones, brainstrust’s Chief Executive, paints a picture of what lies ahead for the charity in the face of this work.

“Our job now is to ensure that this data, and the recommendations that come from it remain in the spotlight. We will push for those that can make the changes we need to make them, and quickly. We have already appraised how we deliver our service and identified collaborations so that we can provide the best support we can for people with a low grade brain tumour, and we would ask everyone else that is here for this group of people to do the same.

We will be making sure the voice of people with a low grade brain tumour is head with parity, and at the highest levels we can. We will do this through our collaborations with the Tessa Jowell Brain Cancer Misson, Public Health England, Children With Cancer UK, Macmillan Cancer Support, Cancer Research UK, NICE and any others who have a shared aim to make life better for those with a brain tumour.

You may have heard about the ‘Wear Grey’ campaign, that has raised funds and awareness for brainstrust’s work over the years. Moving forward, we are dedicating this annual event to raising awareness of the huge, yet invisible impact of a brain tumour diagnosis. Please do support is in this work – contact us on hello@brainstrust.org.uk or 01983 292 405 to get involved.”

And of course, we are here for you too. If you have concerns about life with a brain tumour, high grade, or low grade, please feel free to get in touch on 01983 292405.

 

The Get Data Out project, Cancer Outcomes Statistics for Public (COSP) use

The data behind this report 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: cancerdata.nhs.uk/standardoutput

The project is no longer in pilot stage, and has now also released data on pancreatic, testicular and ovarian cancer.

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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