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Discrepancies in long-term care of childhood cancer survivors

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by Cancer Research UK | News

9 February 2004

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Important variations in the levels of long-term care given to survivors of childhood cancer have been revealed by experts from Cancer Research UK and the UK Children’s Cancer Study Group.

They believe national guidelines need to be implemented more effectively, so that all childhood cancer survivors are followed up appropriately.

In their new study1, researchers surveyed 71 clinicians responsible for long-term care of children and found that nearly half discharged some of their patients after treatment, in contrast to the rest, who followed up all of their patients for life.

The authors believe regularly updated guidelines that are easily accessible to clinicians are necessary to ensure standardised care for survivors of childhood cancer across the UK and Ireland.

Study author Dr Aliki Taylor, a Cancer Research UK Training Fellow at the University of Birmingham, says: “The treatment for childhood cancer has been so successful that now more and more patients are surviving the disease. Long-term follow-up is essential as survivors can still experience health problems many years after treatment has finished.”

The length of follow-up for specific groups of survivors largely depends on the treatment they received as a child. Clinical guidelines developed by the UK Children’s Cancer Study Group (UKCCSG) on long-term follow-up have been available since 1995, but the new study suggests they are not universally followed.

Researchers designed a questionnaire to assess the levels and nature of current long-term follow up practices. Questions related to discharge policy, the types of clinics available to survivors and the involvement of nurses in long-term follow up.

They sent the survey to clinicians involved in long-term follow up of childhood cancer survivors in each of the 22 UKCCSG treatment centres in the UK and Ireland. They received 71 replies, a response rate of 77 per cent.

Of the 71 clinicians, 68 (96 per cent) followed up all survivors in a hospital clinic until at least five years after the end of treatment. Only two reported discharging before this period but always to the patient’s GP.

After this five-year period, they found that 37 (or 52 per cent) of the clinicians continued to follow up all their patients for life, but 32 (or 45 per cent) discharged some of their patients, nearly always to the patients’ GP.

The majority of patients discharged subsequent to five years after treatment had either benign or stage 1 tumours or were treated with surgery alone. However, there were five (or seven per cent) of the clinicians who indicated that they had discharged all or most of their patients.

Study author Dr Mike Hawkins, Director of the Cancer Research UK Centre for Childhood Cancer at the University of Birmingham, says: “Our study found important variations between clinicians in decisions on who should be discharged and when.

“It’s clear we need a system to improve the implementation of national guidelines, to ensure that survivors don’t miss out on long-term surveillance should there be evidence they require it.”

In the new report, researchers also analysed preliminary data from the British Childhood Cancer Survivor Study (BCCSS), which is looking at the long-term effect of anti-cancer treatments in survivors of the disease.

Researchers contacted some 11,000 GPs of adult survivors and asked them whether their patients were on regular hospital follow up. Over 60 per cent of the GPs reported that this was not the case.

“Co-author, Dr Gill Levitt, Consultant in Paediatric Oncology and Late Effects at Great Ormond Street Hospital, says: The requirement for long-term follow-up should be evidence-based in relation to treatment received.

“There is a need for more evidence, but the requirement for all survivors to remain on hospital consultant led follow-up is unlikely to be supported and discharge to general practice and nurse led surveillance is likely to be appropriate for specific groups of survivors. Communication might be improved by wider use of patient held records summarising diagnosis, treatment received, potential side effects and suggestions for monitoring.”

Professor Andy Pearson, Chairman of the UK Children’s Cancer Study Group, says: “Among current major objectives of the UKCCSG are the standardisation of clinical follow-up of survivors of childhood cancer and the continuing development of the most appropriate methods of follow-up.”

Dr Hawkins adds: “Around one in 1000 young adults in the UK is a survivor of childhood cancer, which means they are no longer the tiny minority they used to be. It’s therefore crucial we address the levels, nature and quality of long-term care for survivors and establish systems for maintaining best practice.”



  1. Pediatric Blood and Cancer (2004) 42 (2)