Our children, a diagnosis too late

I have been asked by a few people about the theory behind the awareness cards and whether we truly think they will make a difference. I have no doubt they will if we can roll them out far enough the scheme could potentially have a large impact.

Childhood cancer is classed as rare, but actually it more common than we believe. Each year in the UK, almost 2,000 children under the age of 15 are diagnosed. This approximates at a 1 in 500 chance of developing cancer by the age of 14.

Childhood cancer is the number one non-accidental cause of death in children aged 1 – 14, yet there is little training in recognising the signs and symptoms.

Currently, the UK has one of the lowest childhood cancer survival rates in Western Europe. The information below may give us an idea of why this is.

There is a very important (but exceedingly difficult to find) document on how children with cancer present and where they are diagnosed. This research has been done by the NCRAS (National Cancer Registration and Analysis service), and funded by Cancer Research UK in partnership for pretty much all of the major cancers including children. The statistics for other cancers appear to be freely available on both their websites in a variety of locations. However, the document on how children present is pretty hard to find. Many professionals I have spoken to were not aware that such a document even existed.

If you would like to read it in its entirety,the link can be found here on the National Cancer Registration and Analysis page. Scroll down towards the bottom of the page. In the middle of the list, you will find a small abbreviated subheading, “CTYA Cancer Routes to Diagnosis Briefing.”

Interestingly, the childhood cancer document is not found under the main page on children’s and teenage cancers topic specific work (unlike the teenage cancers document) as would be expected (and as is done for all the other respective cancer types). Trust me, this took a lot of finding.

Childhood cancer, routes to diagnosis

The routes to diagnosis update (NCRAS, 2015) states currently that 53% of cases of childhood cancer are diagnosed as an emergency presentation. Effectively this means that over half of the cases of childhood cancer in the UK are not diagnosed until a child becomes severely unwell.

Why does this matter? We will explain.

It has long been established in adults that those who present as an emergency have much poorer long terms outcomes than those who are diagnosed before they become very unwell (for example via GP referral or through screening tests).

Why is this?

Because those diagnosed via an emergency presentation are more unwell at diagnosis (and usually their cancer is more advanced) than if it had been picked up a few weeks earlier when they may have had a few symptoms but still felt well. The exact figures on children are not clear (the statistics could not be found), but it is very likely that they follow a similar pattern to other cancer types in this way.

So for illustration, let's have a look at survival rates from a different type of cancer (bowel cancer) to see how the route of diagnosis affects their outcomes.

The graph shows the proportion of people diagnosed in different ways that are still alive 12 months after diagnosis.

For those referred via their GP referral system or the urgent suspected cancer pathway, 80 - 82% of patients are still alive 12 months after diagnosis. For those presenting as an emergency, less than half (49%) are still alive after diagnosis. The figures show quite dramatically how presenting later in the course of the disease makes outcomes far worse.

Effectively, those who present as an emergency are more likely to have cancer that has already spread, and are therefore less likely to survive.

How do childhood cancers compare with different adult cancers in terms proportions of children presenting as an emergency?

Unfortunately, not so well.

The figures in the graph below are taken from statistics on the NCRAS website. As you can see, a very high proportion of children present as an emergency compared to a number of other cancer types such as breast, prostate or colorectal (bowel) cancer.

Just over double the number of children present as an emergency compared to teenagers and young people. The rate of presentation as an emergency for childhood cancers is almost 2.5 times the national average for all cancers combined.

The question remains why children present so much later than adults. It is thought that this difference exists mainly because of lack of awareness of the problem of childhood cancer, a lack of a formal fast track referral system (unlike adults) that simply outlines red flag symptoms in children and also the relatively generalised symptoms that it may present with.

Many doctors receive little or no formal training in recognising the signs and symptoms in children through no fault of their own, and this is why we are pushing for change.

The future, how we need to help

To help improve childhood cancer outcomes we need to increase the numbers of children being picked up earlier by their GP, health visitor or by parents of schools noticing signs and symptoms. Identifying children earlier will give them the best possible chances of survival. Increasing the awareness of signs and symptoms at presentation amongst parents, health visitors and clinicians is the aim of this article.

The Grace Kelly Ladybird Trust has was involved in the building of a learning module for GPs for the signs and symptoms of childhood cancer, and a series of other articles too. Currently, we are working with the Institute of Health Visitors nationally to produce other educational materials (for parents and health visitors) too.

We are also lobbying for an improvement in current guidance, and also eventually for a fast track referral system for children, like for adults. This is a way off, but is very much needed. Raising awareness of problems of childhood cancer and how under-publicised it is will go along way towards pushing for change as well.

As well as earlier diagnosis, we need to continue to push and lobby towards improved research into children’s cancers too as mentioned in previous blogs. By approaching this from both directions, it will have the greatest effect.

What can you do to help?

Please do share this blog, the more people that are aware, the better.

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Please email contact@gracekellyladybird.co.uk if you could give awareness cards out at local schools, GP surgeries, Accident and emergencies or childcare settings or help in any way. It really could save a life.

Because the children of today all deserve to have a tomorrow.