In Brain News, Press Releases

National Institute for Health and Care Excellence (NICE) Quality Standards for brain tumours launched last week

Way back in the hot, heady August days (we think there were some) brainstrust invited you to give feedback on 5 draft quality statements designed to improve the standard of diagnosing, monitoring and managing any type of primary brain tumour or brain metastases in people aged 16 or over.

The Standards describe high-quality care in priority areas for improvement. We are so grateful to you for your comments and these influenced the final Quality Standards, published on December 7. We were very privileged to be on the Committee that developed these, as well as being able to harvest opinion from the people for whom these are going to have direct impact – people who are living with a brain tumour.

What are NICE Quality Standards?

Quality Standards set out priority areas for quality improvement in health, public health and social care. They highlight areas with identified variations in current practice. Each standard includes:

  • a set of statements to help improve quality
  • information on how to measure progress.

For brain and Central Nervous System (CNS) tumours the following Standards have been developed:

  • Statement 1. GPs have direct access to standard MRI for adults who have suspected brain tumour.
  • Statement 2. Adults with brain tumours have a named healthcare professional who coordinates their health and social care support.
  • Statement 3. Adults with radiologically enhancing suspected high-grade gliomas that are suitable for resection of all enhancing tumour have 5‑ALA guided resection.
  • Statement 4. Adults who finish treatment for brain tumours have an assessment and discussion about the risk of late effects of treatment at their first follow-up appointment.
  • Statement 5. Adults with brain tumours have access to neurological rehabilitation in the community and as an outpatient or inpatient.

What does brainstrust think about these Standards?

These Standards recognise that a step change is needed in these five key areas so that there is parity across the care being delivered to people who are living with a brain tumour. These are the priorities that were identified by the committee and you were invited to give feedback. We think these areas are good areas to prioritise. They aren’t a quick fix, but it does mean that aspects such as having access to prompt scanning, access to a named healthcare professional and access to rehab will now be in the limelight. These are things that are quite simple to expect and that can make a huge difference on quality of life when living with a brain tumour. At the moment we know that sometimes the care offered is different from one region to another, from one hospital to another, from one GP surgery to another. For example, we know that some, but not all of you, are given the name of a healthcare professional whom you can contact. We know too that not all of you have the opportunity to discuss late effects or have access to neurorehabilitation. All of these impact hugely on your ability to be living your best possible life.

We would have liked explicit reference to having a care plan to be included but we didn’t win this one. We’ll be sharing more information about care plans, why they are important and how you can create one in the new year.

Why do they matter?

Quality Standards can be used by anyone who has an interest in improving the health care of people who are living with a brain tumour. This includes commissioners, service providers, practitioners and charities. It could also be patients and those close to them.

They can be referred to by partner organisations who want to follow a consistent approach when defining, measuring and delivering high quality care. Regulators like the Care Quality Commission endorse the use of Quality Standards to help identify and define good quality care.

How will I benefit?

Quality Standards can be used for three things:

  1. Improving the quality of the care you receive e.g.
  • identifying areas for quality improvement
  • designing and conducting audits
  • writing improvement and action plans
  • demonstrating the level at which services should be provided/setting goals
  • training and education.
  1. Monitoring and assuring that the care you receive is of good quality e.g.
  • developing frameworks for quality assurance
  • identifying gaps in services, benchmarking and monitoring/tracking changes
  • setting key performance indicators (KPIs) and monitoring performance
  • evidence of service quality for regulators.
  1. Influencing commissioning
  • identifying support or changes needed to improve services
  • supporting business cases along with requests for funding and resources.

Whilst they are not mandatory, they do support the government’s vision for a health and care system focused on delivering the best possible health outcomes.

What happens next?

The Quality Standards shine a light on the areas that are most important and where there is potential to drive quality improvement. They do not cover the whole care pathway and the statements must be measurable and specific. It doesn’t work to say everyone must do everything. The more focussed the statement is the more impact it will have.

Quality Standards are reviewed regularly so there will be an opportunity in the future to revise the priority areas if improvements in quality are achieved.

brainstrust will be making sure these Standards stay front of mind so that we can improvement in patient experience and care.

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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