In Research News

Adult neuro-oncology service provision during COVID-19 outbreak

Like most advice in the current crisis, the following is based on a synthesis of national guidelines, published evidence, expert opinion – and common sense.

Clearly there is a hierarchy of need, and how many of these measures need to be implemented will be dependent upon how severe the pandemic is and what the local capacity is. Solutions will be sought locally and so it will not be a one size fits all. These are guidelines, nothing more.

Sources include NHS England and NHS Improvement, UK Government, the Society of British Neuro-Surgeons, and the General Medical Council. This information applies to England only (although an assumption can be made the service delivery will be similar for all four nations).

Headlines

  • Solutions will be sought locally and so it will not be a one size fits all. These are guidelines, nothing more.
  • All out-patient contact except for new patients with malignant tumours and /or patients that need urgent surgery will be done by phone, teleconsultation, email or letter instead
  • Surgery reserved for urgent cases and length of stay minimised (day case, single night stay)
  • Chemo and radiotherapy minimised and triaged for those most likely to benefit
  • Continue to support all patients even those who may now not get treatment

Pre diagnosis

The key message is that service provision may need to flex as part of infection control. guidance has been issued that modifies the existing cancer waiting times guidance.

The policy remains that providers (e.g. consultants, imaging) receiving referrals may NOT downgrade urgent cancer referrals without the consent of the referring GP.

If a referral is downgraded, then safety netting has to be in place so that if a patient deteriorates or the risk of a cancer diagnosis increases, they can be referred for further investigation.

When a 2 week wait referral is received from the GP, telephone triage will stream patients directly to the test needed.

Nearly 60% of patients who are diagnosed with a brain tumour present via the emergency route.  These patients may have a longer wait at A and E, or they may well be referred to their GP to re-enter the system by the 2ww referral if their situation is not life threatening.

Post diagnosis by an MRI

All referrals will be triaged.

Doctors will only see referrals where there is MRI confirmation of malignant brain tumours, providing there are staff to run clinics. A referral will be a non face-to-face consultation where possible and minimise hospital visits

Anyone diagnosed with a non-malignant brain tumour will have a referral by post or phone.

New Brain Tumour Patients

Surgery – high priority

Surgery reserved for urgent cases and length of stay minimised (day case, single night stay):

  • Resection of malignant glioma in patients suitable for CT and RT
  • Posterior fossa tumours (malignant or non-malignant) causing symptomatic or life-threatening hydrocephalus
  • Meningioma causing major mass effect and neurology (e.g. hemiparesis) or which are life-threatening
  • Supratentorial symptomatic brain metastases
  • Rare brain tumours (e.g. lateral / third ventricle, pineal) causing hydrocephalus – although a temporary fix (e.g. shunt) could be used to delay surgery.

If not a surgical high priority then non-operative approaches in patients least likely to gain significant benefit from treatment e.g. elderly patients with clear diagnosis of high-grade glioma on MRI (e.g. best supportive care).

Surgery low priority – consider postponement

  • Low grade glioma (resection and biopsy) where a period of interval monitoring with MRI is a reasonable management option (in the likely event of 3-6 months delay consider adding in a 3-month interval scan to ensure no tumour progression, if not already done)
  • Skull base tumours (e.g. meningioma, vestibular schwannoma) with minimal symptoms where an elective scheduled procedure was already planned.

Non-malignant brain tumours

No surgery for non-malignant, asymptomatic (or minimally symptomatic) brain tumours to be performed as elective services close.

Oncology – high priority

  • HGG for treatment with radiotherapy and chemotherapy – consider reducing course and fractions of treatment where this will not significantly worsen prognosis. Consider increasing use of oral chemotherapy rather than regimes that require IV administration.
  • Chemotherapy may be omitted in MGMT unmethylated glioblastoma patients
  • Brain metastases for stereotactic radiosurgery or whole brain radiotherapy
  • Radiotherapy for other rare malignant tumour (e.g. anaplastic astrocytoma, pineoblastoma, PNET)

Oncology low priority – consider postponement

  • Radiotherapy and chemotherapy for low grade glioma where an initial period of monitoring is a reasonable option
  • Radiotherapy for atypical meningioma or recurrent meningioma.

Follow up brain tumour patients

  • Continue follow-up for malignant brain tumours but reduce face-to-face reviews where possible – use email, telephone, skype instead
  • Stop patients attending clinics for routine review of non-malignant brain tumours
  • Postpone appointments where appropriate and introduce telephone reviews for those where review is required
  • To reduce the need for patients to attend GP surgery 4-8 weeks of medication may be provided on discharge
  • Absorbable sutures may be used on discharge after surgery.

Patients currently on treatment

It depends on:

  • Local circumstance – resources available (drugs, technology, people).
  • Prioritisation – clinicians will make decisions to prioritise treatment for those most in need and in consultation with the patient.

Generally, there are currently no drug shortages as a result of COVID-19. There is no need for patients to change the way they order their medication. The NHS has tried and tested ways of making sure medicines reach the right people, even under difficult circumstances. A problem may arise if patients begin to stockpile.

MDT Meetings

Maintain weekly MDT; can be done remotely if needed. Senior decision makers only. Limit to 2 surgeons, 2 oncologists, 1 radiologist, 1 pathologist, co-ordinator and 1 specialist nurse maximum.

Research Activity

NIHR CRN advice is that studies addressing the COVID-19 pandemic are being prioritised. It is likely that recruitment into brain tumour trials will be suspended for the foreseeable future.

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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