Little Princess Trust News
Study finds kidney cancer care is “safe and effective”

Paediatric research looked at 17 years of data from UK and Ireland
A major study looking into care of a childhood kidney cancer, Wilms tumour, has found that children treated in childhood cancer treatment centres across the UK and Ireland all have the same high chance of recovery, regardless of hospital size or number of cases seen per year.
Recently published in Pediatric Blood & Cancer, the University College London-led research analysed 17 years of data from over 1,000 children with Wilms tumour, looking at whether hospital size and adherence to the nationally recommended standard of care affected children’s survival.
Wilms tumour patients are treated at one of 20 specialist centres in the UK and Ireland, which vary from treating fewer than five children per year to over thirteen. The researchers found that there was no difference in the percentage of children treated with the recommended standard of care between differently sized centres.
Senior researcher emeritus Professor Kathy Pritchard-Jones, from the UCL Great Ormond Street Institute of Child Health, explained: “There's evidence in many adult cancers that patients treated at centres which see larger numbers of that disease have better patient outcomes.
"We wanted to investigate whether this happens in childhood cancer and if treatment received varied from nationally recommended guidelines.”
The research team found that children whose treatment took place at smaller centres were just as likely to survive as those treated at the larger centres.
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In addition, children whose treatment differed from the recommended standard of care did not have a lower chance of survival.
"Our conclusion,” Prof Pritchard-Jones added, “was that the setup, expert networks and national guidelines we have in the UK and Ireland are very effective for delivering safe and standardised care for Wilms tumour.”
The analysis of clinical trial databases (SIOP WT 2001 trial run by the Cancer Research UK Clinical Trials Unit, University of Birmingham; IMPORT study sponsored by Great Ormond Street Hospital and managed jointly with UCL), also showed that higher tumour stages and more difficult risk groups were the main reason for variation from the standard of care as children with bigger and more complex tumours were more likely to need a more individual approach to their treatment.
Prof Pritchard-Jones added: "Some children’s clinical cases are more complicated, or they don’t respond to treatment as expected, so it should be reassuring for parents that variations in treatment, if present, are explainable and do not affect the overall chance of survival.”
While these findings are positive, there is still a clear need for improvement for more complex cases or more advanced tumours.
Current treatments are harsh, often having long-term side effects, and around one in 10 children with Wilms tumour cannot be cured.
Wendy Tarplee-Morris experienced this devastating reality when her five-year-old daughter Hannah Tarplee died in 2005, after enduring “brutal” treatments for her Wilms tumour that could not save her.
"Hannah was a very healthy child, until we discovered the lump in her tummy," Wendy said.
"The treatment she needed made her unrecognisable in every way. We saw first-hand the devastating effects of the current treatments – and ultimately, they didn't save her life."
Hannah’s experience drove her family and friends to establish The Little Princess Trust in 2005. The charity began by providing wigs to children experiencing hair loss from chemotherapy and now also funds research into all types of childhood cancer.

The Little Princess Trust has played a key role in supporting Professor Pritchard-Jones’ work, funding this study and several others.
Wendy emphasised the importance of investing in research: “Whilst we welcome the reassuring findings from this study, it’s vital to support ongoing research that makes treatments more effective and potentially safer. Without research, often funded by charities like The Little Princess Trust, progress simply can’t happen.
“We know that families can't just wait for things to get better; current treatments are extremely toxic, and some childhood cancers still have extremely poor survival rates. That's not acceptable - how could we not want to change that?”
The most effective thing you can do to maximise the chance of ‘cure at least cost’ is to diagnose the tumour as early as possible.
Earlier LPT-funded research, also published in Pediatric Blood Cancer, found that the average childhood kidney tumour size at diagnosis in the UK and Ireland has not changed in 20 years.
Tumours are still often larger at diagnosis than those seen in other European countries. Larger tumours typically require more intensive treatment, which can lead to long-term health problems even when survival rates are high.
Prof Pritchard-Jones, who led the research, said: “The most effective thing you can do to maximise the chance of ‘cure at least cost’ is to diagnose the tumour as early as possible.”
She added that these findings highlight the need to support Child Cancer Smart, an awareness campaign led by CCLG: The Children & Young People’s Cancer Association which aims to help families and GPs recognise abdominal tumours sooner.


