Children in the UK and Ireland have to wait longer to be diagnosed with kidney cancer than in the rest of Europe, experts reveal.

Children with kidney cancers continue to be diagnosed with larger and more advanced tumours in the UK and Ireland than in other parts of Western Europe.

As a result of a recent study’s findings, a leading childhood cancer expert has called for all staff providing primary health care for kids in the NHS, to be trained in paediatric medicine, so that diseases like kidney cancers don’t slip through the net.

Mrs Reem Al-Saadi, a senior translational research manager at University College London’s Great Ormond Street Institute of Child Health, used the findings from this study to systematically show how children are diagnosed with kidney cancer in the UK.

Mrs Al-Saadi reported 603 out of 712 children who were registered with having kidney cancer between 2012 and 2018 were treated in 20 different centres in the UK and Ireland.

She went on to say that 86 per cent of the kids had Wilms tumour, which is the most common type of kidney cancer in children, and 14 percent had non-Wilms kidney tumours.

Computerised tomography (CT) and magnetic resonance imaging (MRI) scans that create detailed images inside the body were reviewed as part of the research, to ensure the consistency of their diagnosis.

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Mrs Al-Saadi said: “We found that spread of the kidney cancer to the lungs was detected in 24% of children; this was definite in 18%, and detected only by the CT scan in 6%, which means the nodules were so small that there is uncertainty about whether they are cancerous or not.

“The majority of children were only diagnosed once they had started to show symptoms: 77% had symptoms specific to tumours at diagnosis, such as abdominal mass, abdominal pain or blood in the urine; 16% had non-specific symptoms; 5% were diagnosed as a result of genetic screening and 2% as a result of a child health check.

“This means that only a few cancers are being picked up incidentally before symptoms start to show.”

According to Miss Al-Saadi, the average size of the tumours was 547ml in volume, with one quarter being larger than 901ml.

She continued: “The tumour volumes we saw are not significantly different to those from an analysis of children diagnosed in 2002-2011 when tumour volumes were shown to be larger than those found at diagnosis in Germany.

“The median volume then was 572ml in the UK compared to 382ml in Germany.”

The study’s findings come from the study called Improving Populations Outcome of Renal Tumours of Childhood (IMPORT), which has since been expanded to include international research groups, to become the UMBRELLA study.

With the exception of work currently being done in Germany, this study is the first of its kind to collect standardised data on the route to diagnosis for a child suffering from kidney cancer.

Kathy Pritchard-Jones, a professor of Paediatric Oncology at UCL Great Ormond Street Institute of Child Health, is the chief investigator of the IMPORT and UMBRELLA studies.

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Speaking before the NCRI Festival, where the findings were shared, she said: “We only have very early comparative data for about 1,000 cases diagnosed from 2019 onwards, but this early analysis from the UMBRELLA study found that 75% of children in the UK and Ireland are diagnosed with tumour-related symptoms, which is higher than in most other European countries. This confirms similar findings from an international trial conducted between 2001 and 2011.”

She continued: “We know that in European countries where children have smaller tumours at diagnosis, the primary care provision is done by trained paediatricians working in the community.

“They may be more likely to examine a child all over when they come in with vague symptoms and, therefore, are more likely to pick up that something isn’t quite right in the abdomen.”

Childhood kidney cancer is a rare disease and Wilms tumour is diagnosed in about 87 children each year in the UK.

Professor Pritchard-Jones added: “Efforts are required to achieve earlier diagnosis of kidney cancers in children in order to improve survival rates in the UK and Ireland.

“We believe that frontline primary healthcare for children should be provided by staff trained in children’s medicine.

“The problem of late diagnosis for kidney cancer is part of a wider problem of late diagnosis of serious diseases in childhood in the UK that has been highlighted by the Royal College of Paediatrics and Child Health.”

The findings that were presented at the NCRI Festival, included a minimum of two years of follow-up observations.

During this time 78 kids relapsed and 44 died.

Professor Pritchard-Jones said: “Treatments haven’t changed in the past decade, and we expect the UMBRELLA study to show overall survival rates to remain similar at just over 90 percent.

“The study will enable us to make international comparisons to see how the UK is performing in terms of early diagnosis and treatment for children with abdominal tumours, and it will help us to monitor improvements.”

Prof Pritchard-Jones and her colleagues are investigating ways to personalise treatment to each child, based on biological signals that could be used to identify the intensity of treatment needed.

The team are also using artificial intelligence to assess the nodules seen inside the kidneys on CT scans, to assess their likelihood of being cancer that has spread from the primary tumour.

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Richard Neal, member of the NCRI Screening, Prevention and Early Diagnosis (SPED) Group said: “It’s disappointing to see that there has been very little progress in the past 20 years in diagnosing this disease at an earlier stage when the tumours are smaller and easier to treat successfully.

“This work also demonstrates the difficulty in picking up these tumours at an early stage.

“There may be additional challenges in diagnosis as a result of the COVID-19 pandemic, with fewer patients, including children, being seen face to face and having physical examinations.

“We urgently need work to explore what interventions might work to improve the situation.”