Campaigning to make Quality of Life a priority

What is Quality of Life?

We know a brain tumour diagnosis has a significant impact on your life. Because of this, we need to make sure that quality of life is high on everyone’s agenda – yours, clinicians’ and the research agenda. It’s not enough to add quality of life as the last outcome measure to a clinical trial, as if it is an afterthought.

Before you entered this world of brain tumours, you probably considered your quality of life in terms of its contentedness, or richness. It can mean different things to different people.

Now it’s more likely to be focused on your health – this is referred to as health related quality of life (HRQoL). It covers many aspects of your life including your physical, mental and social functioning, and emotional well-being. For you it might centre on symptoms and effects of treatment, about being able to function as well as you can, while getting to grips with this ‘new normal’.

On this page you will find:

What it means to brainstrust

We know that a better quality of life can mean a better outcome. But we also know that people feel lost, confused and isolated – leading to a lower quality of life.

Improvements in quality of life are becoming more important in research. This is crucial – we believe focus on research and treatments must be given to the quality of life someone is living, not just the length.

We know too that an improved quality of life for the brain tumour community means:

  • Understanding your illness.
  • Exploring options for treatment and for living with the illness – to the best of your ability.
  • Sourcing information, knowledge, help and advice.

We’ve recently published a report on neuro-rehabilitation called Quality of life: what the brain cancer community needs. You’ve helped us identify the key gaps in how neuro-rehabilitation is being delivered and we’ve proposed changes, putting you more in control of recovery and resulting in better outcomes. We’re building resources to address the specific challenges you live with, such as fatigue, personality changes and how you want better conversations with your healthcare team.

You’ve helped us to identify what’s needed to improve your quality of life, and we’re meeting your needs. 

We want to understand and raise awareness of real patient and carer issues. Click here to find out how you can help us help you.

How you can get involved

Together we can make sure that quality of life is not just our priority, but everyone’s.

There are four ways you can get involved.

  • Share with us your experiences about quality of life.
    Good or bad, we need to know. You can email hello@brainstrust.org.uk, pop a post it on our Share Aware pinboard, pick up the phone or drop us a line. Talk with us.
  • Ask your clinicians about quality of life.
    Do so when talking about your treatment and clinical trials. Ask how these things might impact on you and what you should expect. Tell them it is important to you.
  • Tell them about brainstrust
    Tell them about how we can help you and your clinical team achieve a better quality of life.
  • Help us to provide resources that ensure everyone has a good quality of life
    This includes patients and their carers. Hold a tea party, ask a friend to run a marathon or just make a donation. Everything helps us to help you.

To see how we can help you now, visit our report launch page and to see how we’re working with leading clinicians, NHS bodies and researchers, visit our Clinical Research page.

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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