CCLG-Referral guidance for suspected cancer in children and young people
The NICE guideline covers the identification of symptoms that could be caused by cancer in people of all ages. It outlines appropriate investigations in primary care and selection of people to refer for specialist opinion.
This guidance is specific to children as it is recognised that there are a number of differences in the presentation, referral pathways and care of children with cancer compared with those of adults.
Referral guidance for suspected cancer in children and young people
This booklet accurately reflects recommendations in the NICE guidance on recognition and referral for suspected cancer.
National Institute for Health and Care Excellence April 2021
Rationale and evidence base for a paediatric supplement
Referral guidelines for children with suspected cancer were first published in 2005 and revised in 2015. Whilst the 2015 document provides some evidence to support the guidance offered, this is based on evidence from primary care, which is sparse with respect to presentation of cancer in children. The 2015 guidance also presents most of children’s malignancies alongside their adult counterparts. However, there are differences in incidence, presentation and types of malignancies seen in the younger age group. Consequently, key symptoms and signs of children’s cancer do not receive due emphasis in the 2015 document.
Following discussions between the Children’s Cancer and Leukaemia Group (CCLG, the UK multi-disciplinary professional body for health care professionals caring for children with cancer) and NICE, it was agreed that a practical supplement to the 2015 document should be produced, to address the particular issues around referral of children. This was to draw on expertise from professionals involved in the management of children with cancer, together with input from a wide range of stakeholders, in order to produce a consensus document that would serve as a practical supplement for those working in primary care.
Cancer presentation to primary health care
The individual risk of cancer from birth to age 25 years is now 1 in 180, so whilst it may be regarded as an uncommon presentation in primary care, it is important that it is considered in a differential diagnosis in a child presenting with unexplained symptoms.
Referral down a suspected cancer pathway can be highly traumatic for patients and families, and the ability to streamline and standardise this approach is therefore vital. Conversely, whilst it can be difficult to identify those who need further investigation, false reassurance may lead a child down a pathway which is associated with extended diagnostic delay. Early identification of cancer must therefore be a goal for all healthcare practitioners.
The significance of a delayed diagnosis presents a challenge for primary health care professionals, who are required to triage symptoms that may point to a cancer diagnosis from those which are not and make appropriate onward referrals. Many symptoms associated with cancer are non-specific and are seen every day in general practice, whilst a cancer diagnosis is seen infrequently.
Cancer is the most common cause of death in childhood
Death in childhood is a rare event in the developed world. However, cancer remains the most common cause of death in children aged 1-15 years, responsible for over 1 in 5 deaths of children in this age group. Cancer is rarely preventable in childhood, but early identification is likely to reduce morbidity and mortality. Even when treated successfully, cancer is a major cause of long-term morbidity for the affected child, and their family.
There is a problem of time to diagnosis
Delays in the diagnostic pathway may well lead to more advanced disease at presentation, with subsequent greater risk of death, greater morbidity, and inevitably, distrust of the medical system. There is evidence that tumours presenting in childhood in the UK are larger, at a more advanced stage and require more therapy than those presenting in other parts of Europe. Outcomes for childhood cancer, although similar, are worse than some of our European neighbours, despite similar or even identical treatment strategies. There is current ongoing collaborative research, aiming to explore and explain the reasons behind these differences.
Early identification of cancer must be a goal for all healthcare practitioners. Clear warnings are needed where possible, but there are many occasions when a pattern of symptoms and signs point strongly to cancer. Individual features alone are too imprecise. Children often cannot express symptoms clearly, and for this reason, the level of suspicion must necessarily be kept high.