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An update on the impact of Coronavirus on brain cancer treatment

On 7 May we had our weekly update call with the National Clinical Director for Cancer and the Programme Director for the NHS Cancer. We are moving from the acute phase (where the focus has been on diagnosing and treating people with COVID-19) through to the restoration and recovery phases.

What does this mean?

The restoration phase is focused on getting cancer services back up and running to where they were pre COVID-19 and downsizing COVID-19 resource, including deep cleaning of CT scanners. This phase should last until August, when the recovery phase will begin. This will run through to March. This phase is where things are settling, as service delivery returns to normal, and new practices that have evolved from COVID-19 will be embedded.

What does these phases look like?

The restoration phase has already started with kickstarting diagnostic services – this is the priority. The 2 week wait (2ww) referral would normally have a run rate of 40,000 referrals a week. This dropped to 9,000 three weeks ago. This week the number of 2ww referrals has increased to 18,500 – an improvement but still well below 50% of where they should be.

Other diagnostic tests are being stratified according to risk – this means that the greater the risk the more priority will be given.

At the moment CT scanners are not running at ‘full tilt’ – but it is anticipated that more provision will be needed for CT scans. This is because the need will increase to meet the backlog of diagnostic demand. For example, 60 – 70% of bowel cancers are diagnosed through colonoscopy. However, CT scans are a useful tool in diagnosing bowel cancer so some of these colonoscopies may be referred for a CT scan instead. The extra CT capacity will be a time limited problem as the backlog is cleared.

Recovery phase will start in August and run through until March. This phase will be about supporting people who haven’t been to their GP but who are concerned they may have cancer, and picking up people who are on active surveillance (things are stable and you are being monitored). This group may have had scans postponed or cancelled. These will be picked up as the backlog of diagnostic tests is cleared. It is thought at this point that the number of referral waits will go above the usual ‘run rate’ as people come back into the system.

If you have had scans, surgery or treatment postponed, this should be picked up again once the risk of catching COVID-19 has passed and it is safe for you to restart your treatment or have your scan. If you have any concerns then do contact your clinical team. 

Your chance to feedback about your experiences

There’s so much we still don’t know about COVID-19, like why some of us have mild symptoms or how diet affects our risk. Finding answers to these questions is more urgent than ever. Without having to leave your home, you can be of vital help by taking part in these surveys from IQVIA and CRUK.

IQVIA COVID Active Research Experience (CARE) project:

This CARE Programme is international and wants to find out about the factors that may increase, or decrease how badly we are affected by COVID-19 infections, including looking at underlying health conditions, prescription and over-the-counter medications, vitamins, minerals and herbal remedies.

CRUK Patient Experience Survey:

CRUK’s Patient Experience Survey wants to identify the impact of COVID-19 on cancer. CRUK wants to hear from patients affected by cancer about the challenges of day to day life, changes to treatments and care due to COVID-19. The insights from the survey will inform the work Cancer Research UK does in response to the impact of COVID-19 on cancer patients in the UK.

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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