Training Needed in UK to Spot Child Kidney Cancers Earlier

Liam Davenport

November 10, 2021

Children with kidney cancers, including Wilms’ tumour, are typically diagnosed in the UK and Ireland when they have more advanced tumours and a larger tumour volume than generally seen in other European countries, indicates the first phase of an international comparator study.

Crucially, the data also suggests that there were no improvements in diagnosis in the UK and Ireland since a similar study was conducted 10 years previously.

Reem Al-Saadi, senior translational research manager, UCL Great Ormond Street Institute of Child Health, University College London, and colleagues studied 603 children diagnosed with various forms of kidney cancer between 2012 and 2018, of whom more than 85% had Wilms’ tumours.

They found more than 75% of children were diagnosed only when they developed tumour-specific symptoms. "This means that only a few cancers are being picked up incidentally before symptoms start to show," Mrs Al-Saadi said in a news release.

Moreover, the children had a median tumour volume of almost 550 ml, which was "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", she added.


The results, presented at the 2021 NRCI Festival on November 8, are from the Improving Population Outcomes for Renal Tumours of childhood (IMPORT) study, which has since expanded internationally and become the UMBRELLA study.

Lead investigator Kathy Pritchard-Jones, professor of paediatric oncology at Great Ormond Street Institute of Child Health, London, said that UMBRELLA has so far compared around 1000 cases diagnosed since 2019.

This showed that the rate of diagnosis with tumour-related symptoms in the UK and Ireland is "higher than in most other European countries", and "confirms" the similar findings seen in previous analyses.

"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," Prof Pritchard-Jones said.

"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.

"Efforts are required to achieve earlier diagnosis of kidney cancers in children in order to improve survival rates in the UK and Ireland."

Prof Pritchard-Jones suggested that "frontline primary healthcare for children should be provided by staff trained in children's medicine". She told Medscape News UK that "in general practice, about one third of GPs have undertaken training in hospital acute paediatrics as part of their general training".

"The remainder will only have had exposure to acute paediatrics during their medical school training," which is generally 4–6 weeks of a 4–6 year course, "and will have had some exposure to paediatrics in primary care as part of their GP training".

In addition, routine health checks after a child is 6 weeks of age are largely "to ensure developmental milestones are on track and that parents don't have concerns".

"These are generally done by nurses and do not involve full examination of the child."

Red Book

Prof Pritchard-Jones also underlined the importance of parental education in what to look for, highlighting the work of the Grace Kelly Childhood Cancer Trust, "which has produced material aimed at parents and community health care staff," and is trialling including their materials in the 'red book' given to new parents.

A spokesperson from the charity Kidney Cancer UK told Medscape News UK: "More training needs to be given to paediatricians across the UK, offering the opportunity to screen children more effectively when kidney cancer is suspected.

"Diagnostic methods need looking at urgently, routine scans should be offered, and closer monitoring of high-risk groups of children is needed.

"Clinicians are facing challenging times currently with COVID-19 but they need to be alert and follow up on any possible symptoms of cancer any child may be showing."

The charity also believes that "awareness campaigns are essential to bring kidney cancer to the attention of parents, along with improved information and training for clinicians".


"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," said Richard Neal, a member of the NCRI Screening, Prevention and Early Diagnosis (SPED) Group and professor of primary care at the University of Exeter, in the news release.

He noted the study "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," Prof Neal added. "We urgently need work to explore what interventions might work to improve the situation."

Wilms’ Tumour

Mrs Al-Saadi began her presentation by noting that Wilms’ tumour is diagnosed in approximately 87 children per year, representing 7% of all childhood cancers. The mean age at diagnosis is 3.3 years, and the survival rate is 91%.

However, benchmarking with international randomised trial data from 2001–2011 revealed that UK children with Wilms’ tumour were diagnosed with larger, more advanced stage tumours than children in other Western European countries.

For the IMPORT study, the researchers aimed to evaluate potential biomarkers for childhood renal cancers via prospective diagnostic data collection, central radiology review and serial biological sampling.

Patients were recruited from 19 treatment centres in the UK and Ireland and treated in line with international best practice.

Case report forms were used to categorise the route to presentation, as well as to collect data on patient and tumour demographics, metastatic response, treatments given, relapse and cause of death, if applicable.

Mrs Al-Saadi presented data on 603 children diagnosed between 2012 and the end of 2018, who had at least 2 years of follow-up. Of these, 86% had a Wilms’ tumour and the remaining 14% another renal cancer. The mean age at diagnosis was 3.3 years.

Only 2% of the children were diagnosed at a routine child health check, with a further 5% identified at genetic screening. Another 16% presented with non-specific symptoms, while 77% were diagnosed as a consequence of having tumour-specific symptoms, such as abdominal mass or pain or blood in the urine.

The median tumour volume at diagnosis in the study was 547 ml, with 25% of cases having a tumour volume of more than 901 ml.

This was similar to a previous study conducted in the UK on patients between 2002–2011, when the median tumour volume was 572 ml and 25% had a tumour volume of 904 ml.

A contemporary German study found that median tumour volumes at presentation were just 382 ml, with similar results seen across a range of other international analyses.

When the team stratified tumour volumes by the route to presentation, they found that children who were diagnosed at a routine heath examination or genetic screening had a median volume of 64 ml.

This compares with 522 ml for children who presented with non-specific symptoms and 656 ml in those who were diagnosed as a result of having tumour-specific symptoms.

The majority (68%) of patients presented with localised disease, while 18% had definite metastases.

Guideline-based treatment was given in 84% of cases. Two-drug chemotherapy was given to 54% of patients, while 32% received radiotherapy to the flank/abdomen and 12% radiotherapy to the lungs.

Seventy-eight (13%) patients relapsed and 44 (7%) died. 

The researchers are now investigating ways to personalise treatment based on biomarkers that could be used to identify the intensity of treatment needed, as well as examining the role of artificial intelligence to assess nodules seen in CT scans for the presence of metastases.


The study was funded by Great Ormond Street Children's Charity; Children's Cancer and Leukaemia Group/Bethany's Wish; Little Princess Trust; Cancer Research UK; European Union Framework programme 7.

No relevant financial relationships declared.

NCRI Festival: Abstract 3583. Presented November 8.

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