National Institute for Health and Clinical Excellence (NICE)
Printable version E-mail this to a friend

Improving care for children and young people with cancer

Children and young people with cancer should be given the opportunity to take part in clinical trials to increase knowledge about the disease and improve survival rates, according to latest standards from NICE.

It is estimated that nearly 3,200 children and young people are diagnosed with cancer in England each year.

Cancers in children and young people differ from those that develop in adults, and are often more complex in nature. This can make them challenging to identify and to ensure that appropriate treatment is provided as quickly as possible.

However, the availability of more effective treatments has meant that survival rates have more than doubled since the 1960s. Now 78 per cent of children diagnosed with cancer now survive for five years or more compared with just 28 per cent in the late 1960s.

A reason for this is the increasing number of children taking part in clinical trials for new cancer treatments, with recent research highlighting the link between survival rates and the number of clinical trials that have been carried out.

To help improve the care of children and young people with cancer, NICE has produced a quality standard which includes seven statements for providing high-quality care.

Among these statements is a call for children and young people aged up to 24 to be offered the opportunity to take part in clinical trials if they are eligible.

NICE acknowledges that the involvement of young people with cancer in clinical trials has made an important contribution to improved cancer survival rates. Consequently, it that says multidisciplinary teams should identify suitable trials and key workers should provide support to the patient and their family in deciding whether to participate.

The quality standard also calls for children and young people receiving chemotherapy to have it prescribed using an electronic prescribing system.

NICE says that this will help address the number of risks associated with prescribing and administering chemotherapy, such as potential errors in calculating correct doses fluid volumes and scheduling. While electronic prescribing is widely used in adult cancer care, it is not available as extensively in all children's cancer services.

Due to the risk of long-term adverse effects from cancer and its treatment, the standard includes a statement on follow-up and monitoring of late effects.

NICE says children and young people (aged 0-24 years) who have been treated for cancer have an end-of-treatment summary and care plan that includes agreed follow-up and monitoring arrangements.

Additional statements cover psychological and social support for children with cancer, their families and carers, and support for potential future fertility problems.

Professor Gillian Leng, Deputy Chief Executive of NICE, said: "Clinical trials lie at the heart of drug development and without children and young people participating in research, there would be no new advancements in treatments and our knowledge of the disease would stall. Our new quality standard recognises this by recommending children and young people be given the opportunity to take part in relevant trials as long as they are eligible to take part and it is what they want to do."

John Anderson, Professor of Experimental Paediatric Oncology at Great Ormond Street Hospital, said: "These standards underline the importance of clinical trials.

"The progress in childhood cancer survival rates has been driven to a large extent by patient participation in national and international clinical trials. Participation of children and their parents in research has contributed to better treatments for those who partake, as well as improving future treatments."

Professor Alan Ashworth, Chief Executive of The Institute of Cancer Research, London, said: "Some childhood cancers remain incurable, and even among children who survive there are high rates of long-term side-effects. The only way to develop new and better treatments for children with cancer is to run more paediatric cancer trials.

"Treating children in clinical trials ensures consistent excellence in care, and means we can learn from every child's experience to improve treatment for others. We need to address the regulatory and financial barriers that exist to running paediatric cancer trials, to ensure as many children as possible benefit from them."

Win a free accessibility audit or usability assessment worth £3,500!