UK’s NICE publishes new standards to improve care for children and young people with cancer

All children and young people with cancer should have the opportunity to take part in relevant clinical trials to increase knowledge about the disease and improve survival rates. This is one of a number of recommendations by the UK’s National Institute for Health and Care Excellence (NICE) to improve standards of care for children, teenagers and young adults with the disease.

The new NICE quality standard for children and young people with cancer says that the participation of the younger generation in clinical trials is “an important factor that has contributed to improved survival rates on childhood cancers.” It calls for suitable trials to be identified by the child or young person’s multidisciplinary care team and that the young child or adult in question is able to make an informed decision about whether or not to participate.

Follows experts’ call for change in EU system

The NICE announcement comes soon after leading cancer experts warned that children with cancer are being denied potentially life-saving drugs because European Union rules are allowing companies to trial some drugs only in adults (The Pharma Letter February 18). Under the current European Union system, pharma companies often gain exemptions from carrying out expensive testing of cancer drugs in patients under the age of 18, even where a drug’s mechanism of action suggests it could work in children, the experts noted, calling for modifications to the system.

Gillian Leng, deputy chief executive of the NICE, said: “It is estimated that nearly 3,200 children and young people are diagnosed with cancer in England each year. Thankfully, survival rates are increasing, due in no small part to new, more effective medicines. 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 recognizes 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.”

Aimed at supporting health care professionals to deliver consistent high quality care, the NICE quality standard’s statement that children and young people with cancer should be offered the opportunity to take part in clinical trials if they are eligible has been welcomed by clinicians and scientists.

Separate multidisciplinary teams should be assigned