In Charity News, Research News, Uncategorized

British Neuro-Oncology Society (BNOS) annual meeting 2019

Helen, our Head of Services and Policy, attended the BNOS Annual Meeting along with Jane, our Support Specialist for London and the South East. They both had a busy few days, meeting clinicians from across the UK to spread the word about the support we offer to people affected by a brain tumour diagnosis.

Support

The BNOS annual meeting is always a great opportunity for us to connect with new clinicians and reconnect with some long-standing advocates of our work. Our resources were sought after: the Patient Guides were the most popular– these flew off the table, hotly followed by the fatigue resource and then our work on Proton Beam.

The support team is in high demand for running coaching workshops across the country  – covering fatigue, the problem/outcome framework and our latest topic, managing behaviour and personality change.

The Golden Study

As ever, we were on the lookout for anything to do with improving the quality of life of people living with a brain tumour. It was good to see the results of the Golden Study shared, which was partly funded by brainstrust. This collaborative study (Brighton and Sussex hospitals, The Beatson (Glasgow), brainstrust and The Royal Marsden) explores whether it is possible to assess people aged 65 years or over who are newly diagnosed with a glioblastoma, with a geriatric screening. This comprehensive assessment predicts toxicity and survival. It can help people who are older decide whether it is better to have treatment and run the risk of a reduced quality of life, or not.

This study is more about the clinical teams and whether the geriatric screening could be fitted into an outpatient setting. It has been very successful, with 84% completing the assessment. Comments from nurses running the screening included:

‘I think an assessment is crucial . . . that 10 minutes doing the test; it tells you so much. We gain so much from that. ‘

‘It’s not too distressing for the patient, and is effective in highlighting their ability for treatment.’

Policy

Sadly there was nothing new, so no surprises here. We’re not learning from failure and current practice has stayed the same for years – patients present and they are referred to the local Multidisciplinary Team Meeting. If a biopsy is done then we have limited molecular markers to help decide what the treatment pathway should look like.

When a malignant brain tumour recurs, treatment is then best guessed depending on what worked first time around. We know from scientific work that the disease evolves and has the advantage; a glioblastoma at recurrence is not the same as the first time around.

BUT we know now what needs to happen to change the landscape and BNOS was a good opportunity to see the view from the bridge. These things need to happen is the landscape is to change:

  • The patient needs to be seen as a model of their own disease, so that treatments are personalised
  • Patient data needs to be capture and integrated
  • Research should be embedded into the pathway of care – along the whole patient journey
  • The current use of mouse and rat models isn’t translating into patient benefit. So we need more effective preclinical models
  • The learning environment needs to be adaptive to engage all sectors
  • Commercial investment needs see the necessary signals, enabling environments, and incentives to confidently invest in neuro-oncology.
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The impact of a childhood brain tumour on survivors and caregiversBrain News, Brain Tumour Data
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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