In Brain News

“…the work goes on, the cause endures, the hope still lives, and the dream shall never die.” Senator Ted Kennedy in 1980.

All our thoughts and best wishes to the Kennedy family following their loss. 

Following article courtesy guardian.co.uk

Ted Kennedy, the last surviving brother of one of America’s leading political dynasties, has died of a brain tumour at the age of 77.

Edward Kennedy was the senior US senator from Massachusetts and a liberal stalwart of the Democratic party. At the time of his death he was the third longest serving senator of all time.

“Edward M Kennedy, the husband, father, grandfather, brother and uncle we loved so deeply, died late Tuesday night at home in Hyannis Port (Massachusetts),” the Kennedy family said in a statement.

“We’ve lost the irreplaceable centre of our family and joyous light in our lives, but the inspiration of his faith, optimism and perseverance will live on in our hearts forever,” the family statement said.

Ted Kennedy was diagnosed with brain cancer in May 2008.

Like his two assassinated brothers, President John Kennedy and the presidential candidate Robert Kennedy, he was expected to scale great heights politically.

But his political career was significantly blighted by the Chappaquiddick incident of 1969 in which the car he was driving ran off a bridge and plunged into water, killing Mary Jo Kopechne.

His death marks the twilight of a political dynasty and deals a blow to Democrats as they seek an overhaul of the healthcare system, one of Kennedy’s personal goals.

President John Kennedy was assassinated in 1963, and their brother, Senator Robert Kennedy, was fatally shot while campaigning for the 1968 Democratic presidential nomination. The fourth brother, Joe Kennedy, was a pilot killed in the second world war.

When Ted Kennedy first took the Senate seat previously held by John in 1962 he was seen as something of a political lightweight who owed his ascent to his famous name.

Yet during his nearly half-century in the chamber, Kennedy became known as one of Washington’s most effective senators, crafting legislation by working with lawmakers and presidents of both parties and finding unlikely allies.

At the same time, he held fast to liberal causes deemed anachronistic by the centrist “New Democrats” and was a lightning rod for conservative ire.

He helped enact measures to protect civil and labour rights, expand healthcare, upgrade schools, increase student aid and contain the spread of nuclear weapons.

“There’s a lot to do,” Kennedy told Reuters in 2006. “I think most of all it’s the injustice that I continue to see and the opportunity to have some impact on it.”

After Robert Kennedy’s death, Ted was expected to waste little time in vying for the presidency. But in 1969 a young woman drowned after a car Kennedy was driving plunged off a bridge on the Massachusetts resort island of Chappaquiddick after a night of partying.

Kennedy’s image took a major hit after it emerged he had failed to immediately report the accident to authorities. He pleaded guilty to leaving the scene and received a suspended sentence.

Kennedy eventually ran for his party’s presidential nomination in 1980 but lost to the incumbent President Jimmy Carter.

His presidential ambitions thwarted, Kennedy devoted himself to his Senate career.

Gordon Brown, the British prime minister, paid tribute to Kennedy, saying he would be “mourned not just in America but in every continent”.

The US Senate majority leader, Harry Reid, said it was “the thrill of my lifetime” to work with Kennedy. “Senator Kennedy’s legacy stands with the greatest, the most devoted, the most patriotic men and women to ever serve in these halls … The liberal lion’s mighty roar may now fall silent, but his dream shall never die.”

Tributes came from across the political spectrum – testimony to his ability to form close bonds with political opponents. The former first lady Nancy Reagan said: “Given our political differences, people are sometimes surprised by how close Ronnie and I have been to the Kennedy family. In recent years Ted and I found our common ground in stem cell research, and I considered him an ally and a dear friend. I will miss him.”

Orrin Hatch, Republican senator from Utah, said: “Today America lost a great elder statesman, a committed public servant and leader of the senate. And today I lost a treasured friend. Ted Kennedy was an iconic, larger than life United States senator whose influence cannot be overstated. Many have come before and many will come after, but Ted Kennedy’s name will always be remembered as someone who lived and breathed the United States Senate and the work completed within its chamber.”

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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