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

Chart instructions

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 tool 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, the proportion who received radiotherapy, as well as the survival of the patients within the group.  For more information about what these metrics mean, please see the descriptions below.

There are two dashboards in this tool so that you can compare different groups of patients side by side.

The tool is best used on a laptop or tablet rather than mobile phone.

To use the interactive chart to select a group of patients and explore different metrics:

1. Select the year of diagnosis by moving the slider from left to right.
2. Select your filters of interest from the four drop down lists in the following order:
   1. Site Diagnosed
   2. Age at Diagnosis
   3. Region of England
   4. Sex of Patient
3. Repeat for the second dashboard to select a comparison group if desired
4. Both charts will refresh accordingly with each selection.

Please note that data for some groups of patients is not available because there are not enough patients within these groups for data to be released safely following guidelines from Public Health England.

Chart Descriptions

Routes to Diagnosis

Under the ‘Routes to Diagnosis’ tab, you can explore the ways patients have been diagnosed with brain cancers. 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. 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. These patients are represented in dark green.

1. 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. These patients are represented in light green.

1. 1. Emergency Presentation

Cancers can be diagnosed via emergency situations such as via A&E, emergency GP referral, emergency transfer or emergency admission. These patients are represented in red.

1. 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). These patients are represented in purple.

1. 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. These patients are represented in blue.

1. 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. These patients are represented in black**

1. Unknown

For some patients with a cancer diagnosis, there is no relevant data available to understand the route to diagnosis. These patients are represented in brown.

Chemotherapy and radiotherapy treatment

In these charts you can also explore the proportions of patients who received chemotherapy and radiotherapy.

Under the ‘Treatment – Chemotherapy’ tab, the proportion of patients diagnosed with a brain cancer who receive chemotherapy is represented in green.  Under the ‘Treatment – Radiotheraphy’ tab, the proportion of patients who received radiotherapy is also represented in green.  On both charts, the proportion of patients diagnosed with a brain cancer who did not receive chemotherapy or radiotherapy is represented in grey.

Survival

You can also explore the survival of patients diagnosed with brain cancer in these charts.

Under the ‘Survival’ tab, the proportion of patients who survived more than 12 months is represented in green; those who survived 9 – 12 months represented in light grey; those who survived 6-9 months in dark grey , those who survived 3 – 6 months in brown people, and those who survived 0 – 3 months in black.

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 (see also age-standardised rate).

Malignant

Malignant tumours which grow by invasion into surrounding tissues and have the ability to metastasise to distant sites

Non-malignant

Not cancerous. Nonmalignant tumours may grow larger but do not spread to other parts of the body.

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 (see also age-standardised rate).

Survival (crude)

The length of time from either the date of diagnosis or the start of treatment for a disease, such as cancer, that patients diagnosed with the disease are still alive. In a clinical trial, measuring the crude survival is one way to see how well a new treatment works. Also called ‘overall survival’ or ‘OS’.

Survival (net)

Net survival estimates the number of people who survive their cancer rather than calculating the number of people diagnosed with cancer who are still alive. In other words, it is the survival of cancer patients after taking into account the background mortality that they would have experienced if they had not had cancer.

If any of the statistcal 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:

http://www.brainstrust.org.uk/advice-glossary.php