In Charity News, Research News

The British Neuro-oncology Society conference, Liverpool 2022- current, innovative and alternative; raising the standard.

The human being is the most technologically equipped thing in the operating room –

Ryan Matthew, Associate Professor at the University of Leeds and Honorary Consultant Neurosurgeon at the Leeds Teaching Hospitals NHS Trust, BNOS 2022.

 

Ryan’s wise and eloquent words sum up the BNOS conference 2022. This was the first face-to-face BNOS since 2019 and it is evident that, despite the COVID-19 tidal wave, people have been incubating ideas, working on projects and using any space to reflect, take stock and explore. And central to everything we heard in Liverpool is the person living with the brain tumour. We can’t possibly cover everything here, but over the next few weeks we will be sharing recordings, soundbites, research and our commentary about what is relevant and meaningful for the community. What we may not be able to do is capture the energy and buzz from the conference.

Marginal gains

There is a sense that things are shifting, the new knowledge we have about genomics and technological developments facilitates the view of the whole patient pathway as one seamless thread. This feels very much live David Brailsford’s principle of marginal gains. This principle was transformative for the British cycling team; it had been struggling to perform, limited by their “big picture” view of winning, they had failed to reach the Olympic podium for decades. Brailsford took the notion that small, incremental improvements across a range of things, when added together, can make a significant improvement. This sense pervaded the conference.

1. Dave Bolton

Adam and Dave Bolton at the BNOS conference 2022

Our Patient Involvement Officer Adam with Dave Bolton

So let’s look at four highlights. The first has to be the inspirational talk by Dave Bolton, who led on mental resilience and coping with change. Dave’s first battle was being run over by an articulated lorry when he came off his motorbike on the Horseshoe Pass in Wales. He’d just got back on his feet (literally) and was flying in his career when he diagnosed with a grade 2 astrocytoma in 2014. This transformed to a high grade in 2015 and he had a full psychotic breakdown due to medication. Today? He is super fit, runs everywhere, and leads a highly regarded cancer prehab and rehab centre.

2. Patient pathways

This is a great segue to the next highlight about the patient pathway. There was a sense of awareness of the whole pathway, with sessions on cognitive evaluation and rehabilitation, integrated enhanced recovery led through multidisciplinary teams, a review of health-related quality of life research, the role of prehabilitation and core outcome sets. As ever, the patient and their caregiver is the mortar here, and it is down to our community that we are able to represent its voice. This isn’t just about diagnosis, or recurrence, or living with; this is about managing transitions so that patients and their caregivers are confident about navigating their path, which is individual to them.  We are looking at how all of these things, whilst complex, can work together to be a seamless experience.

3. What’s new in neuro-oncology neurosurgery

Neurosurgical approaches too have their names up in lights. Ryan Mathew, Associate Professor and Honorary Consultant Neurosurgeon at the University of Leeds gave a forward-looking presentation on what’s new in neuro-oncology neurosurgery. The goals of neurosurgery are twofold – to preserve function, whilst maximising the amount of tumour tissue that can be removed. This is the bottom line. But Ryan showed us all how things are shifting, pre-operatively, during surgery and also post-operatively. Exploring how residual tissue at the margins of the tumour can be removed is one area, another is the local delivery of therapies to the tumour site during surgery, and a third is the paucity of data that we currently have around surgery – ‘the information wedge’. Closing the gap between the lab and the operating room, so that the lab is an extension of the operating room will bring imaging, molecular analysis, histopathology in a synchronous whole.

4. Genomics

Finally – genomics. Such a massive topic. Biomarkers are key for the development of individualised and targeted therapy. The fact that the World Health Organisation has had to update the categorisation of brain tumours twice (2016, 2021) illustrates how far we have travelled. More and more we are now discovering subsets of tumours, all of which have their own footprint, all of which will drive biomarker-decision making. But there is still a disconnect between what we now know and what treatments are available. We can’t though achieve one without the other, and whilst it is good news that we know so much more about the make up of tumours, it does of course mean that the approach is increasingly granular so we will have even smaller subsets of patients in which to test therapies.

 

Helen with the brainstrust stall at the BNOS conference 2022

Helen getting the brainstrust stall set up

So – just a taste of BNOS 2022. We will share highlights in much more detail in the next few weeks. After all, the people living with the brain tumour are the only source of data – and it was heartening to see how much the patient experience was in the DNA of this conference. We’d like to thank the organising committee, led by Andrew Brodbelt and all of the presenters, for bringing so much to the community.

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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