In Brain Tumour Data, Research News, Uncategorized

brain tumour data logoThe National Cancer Patient Experience Survey (NCPES) 2018 is the eighth iteration of the survey, and is an important part of the national NHS Cancer Programme. This places patient experience on a par with clinical effectiveness and safety as a key strategic priority.

Results from the annual survey have just been published. The survey is designed to:

  • Give the cancer community an opportunity to share its opinion about its experience
  • Monitor national progress on cancer care
  • Provide information used to drive local quality improvements
  • Assist multi-disciplinary teams (MDTs), commissioners and NHS Trusts in improving patient services
  • Inform the work of charities supporting cancer patients

We’ve been tracking this every year for five years now, so have a good overview of the trends.

There is some good news, but brain cancer is still behind compared to other cancer sites. When you take a closer look at the data, whilst there has been slight improvement in the last 12 months, some stats are still not at the levels they were in 2014. This is not good enough.

When asked how you would rate your care, brain cancer scored lower than any other cancer site at 8.39. What lies behind this? We think it is a lack of understanding about what it really means to be living with a brain tumour and the daily challenges this brings. This is reinforced by our daily interactions with you:

“It would be good to see a more holistic approach. After my treatment has finished, I was left to my own devices. It would be helpful to have a road map for the patient for how to get back to as much normality – if there is such thing – as possible. Many things required are of a fairly practical nature: moving from independent to assisted living, travel support, dietary support, exercise planning and tracking, hairdressing.” Patient

We know that living with a brain tumour is challenging – on so many fronts. We know, too, that dealing with the challenges that come with diagnosis makes life distressing for everyone involved. Patients feel remorse and guilt. Caregivers and loved ones feel isolated and lost. Challenges include:

  • Threat to way of life
  • Neurocognitive decline
  • Lack of control with behaviour
  • Impact on relationships
  • Systemic problems leading to isolation
  • Access to support.

What progress has been made – and what has fallen short

Care plans:

Whilst care plans have improved by 1%, the number of you being given a care plan is incredibly low at 26.5%, still lower than 27% in 2014.

Care plans feature in the NICE Guidelines, so make sure you ask for one – you are entitled to!

Opportunity to discuss worries and fears:

As both an inpatient and outpatient the score was low on this, 33% and 53% respectively. We are working hard through the shared decision making programme to change how fearful you are in hospital.

Living with uncertainty, dealing with fatigue or changes to behaviour and personality are not things that can be solved with a prescription. This is where we place our focus, so that together we can help you to have your best possible day, whether you are a patient or a caregiver, and no matter where you are on this trajectory.

Working together:

This has dropped by 9%, reversing an upward trend and putting us back to where we were in 2016. It’s a big drop, and it’s hard to say what lies behind this. Our guess is that it reflects an increasingly fragmented health service when the onus is increasingly on the patient and caregiver to manage their pathway. This is where our patient guides step up to the mark.

GP services:

It is unsurprising that 40.2% of you felt that GP services didn’t support you well during treatment in 2018. We know that GPs are overstretched – there is no silver bullet for this. GPs are the patient’s primary carer. They should be supporting you better. The more specific you can be with what you are struggling with, the better this will be.

Early diagnosis:

In 2017, 15% of you visited your GP over three times before you were told you needed to go to hospital about the health problem caused by your tumour. This is now back at 21%, the same level it was in 2015.  Looked at another way, this means the vast majority of you are being diagnosed efficiently, visiting your GP twice or less.

Being diagnosed via A and E is not always a negative; it means you get into the system quickly. We know earlier diagnosis is an issue for some people and that the way they are diagnosed can make a significant difference to their quality of life. We are working on this with a group of clinical researchers and with the National Cancer Research and Analysis Service.

What can be done?

The more focused you can be in the asks you make of your clinical team, and in your feedback to us about the good and the bad, the better. It is only through collaboration that change and progress can be made.

Our first next step: to share a Know How on financial support. Only 57% of you were told you were entitled too free prescriptions and were signposted to financial help. We’ll announce the publication of this resource very soon – so stay tuned. You can find our other Know Hows here.

We will continue to focus on improving the transition point to community care after acute treatment and keep working hard to ensure everyone who is diagnosed with a brain tumour knows about the range and quality of our support. Our biggest advice is to remember to think about “what matters to you”, even if the question you’re being asked is “what’s the matter with you?”. What do you need to have your best possible day?

Talk with a brainstrust coach – we can help you articulate it.

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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