In Brain News

Researchers at Addenbrooke’s Hospital in Cambridge have carried out a study into how NICE guidance has impacted on the level of care for their patients with brain cancer.

For many years, researchers and charities, including brainstrust, have found that patients with brain cancer have been subjected to a fragmented and uncoordinated pathway of care from diagnosis through to treatment and follow-up. In some cases this has been because resources are directed into tackling the bigger name cancers like breast and lung instead.

 

This prompted NICE to publish guidance in 2006 aimed at improving outcomes for people with brain and other central nervous system tumours.

 

This piece of guidance set out a number of key recommendations including the establishment of direct referral pathways and setting up multidisciplinary teams of neurosurgeons oncologists, pathologists and radiologists to review diagnoses and determine the best type of treatment.

 

Measuring the success of the NICE guideline

 

The guidance has since been adopted, to varying levels, by the 34 neurosurgical units across the UK, but little work has been done to measure the impact of the NICE guidance until now.

 

Researchers at Addenbrooke’s Hospital in Cambridge have carried out a study into how the guidance has impacted on the level of care for their patients with brain cancer.

 

For the study, the researchers examined the management of patients in the 6 months immediately before the launch of the NICE guideline and compared the findings with two 6-month periods following the publication of the guidance.

 

The findings, published in the British Journal of Cancer, reveal that implementing the NICE guidelines has had a huge impact on patient care.

 

The research team found a “significant increase”, from 66 to 87 per cent, in the number of patients being reviewed before surgery by a consultant-led team of healthcare professionals.

 

The number of patients receiving magnetic resonance imaging (MRI) scans within 72 hours following surgery shot up from 17 to 91 per cent. Increasing access to MRI scans is essential to help healthcare professionals decide whether additional treatments are needed.

 

Furthermore, the average length of hospital stay for patients decreased from 8 days to 4 and a half days, with waiting periods between the operation and outpatient review also significantly decreasing from 17 to 10 days.

 

Reducing the length of stay in hospital has generated substantial cost savings, with total expenses for patient stay in hospital and imaging reduced by almost half (from £2,096 to £1,316).

 

Consultant-led, cost-efficient services for patients

 

The research was led by Mr Mathew Guilfoyle, specialist registrar in neurosurgery from the Cambridge University Department of Clinical Neurosciences.

 

Mathew says: “Prior to the establishment of the pre-operative clinics, patients would be typically transferred acutely to the neurosurgical centre and remain an inpatient until their operation on an available emergency list.

 

“Since establishing the current service, patients are seen by a specialist neurosurgeon in the outpatient clinic to discuss the results of investigations, for example MRI scans, and the management options available.

 

“The process of consent for surgery is also commenced in the clinic. Patients are given a planned operating date and are admitted from home on the day of surgery.”

 

Commenting on cost-efficiency, Mathew says that the reductions in length of stay help to offset the cost of additional imaging and more advanced surgical treatment, such as fluorescent guided resection.

 

Adopt this universally to reduce length of hospital stays

 

Mathew believes that the redesigned system of care maximises the time patients are able to spend at home and increases their involvement in decisions regarding their own treatment.

 

He adds: “The model of care described in the research paper both improves patients’ experience of care and the standard of treatment received, without introducing delays and remaining cost efficient.

 

“Our model should be adopted by other units and represents what the current standard of care should be.

 

“If adopted universally, we would expect length of stay to come down and more subspecialised services develop, without any increase in cost or overall time for treatment.

 

“With improved access to better treatment and enhanced research we would hope to see increases in survival for patients with brain tumours.”

 

 

 

Information sourced from http://www.nice.org.uk/newsroom/features/HowNICEGuidelinesAreTransformingServicesForBrainCancerPatients.jsp#startContent , first published 25th August 2011.

brainstrust funds the launch of the UK’s first nationwide brain tumour tissue bank Charlotte’s Bank of HopePress Releases
team brainstrust takes on Run to the BeatFundraising

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