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 National Institute for Health and Care Excellence (NICE) to improve standards of care for children, teenagers and young adults with the disease[i].

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.

Professor Gillian Leng, Deputy Chief Executive of 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 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."

Aimed at supporting healthcare 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.

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."

The NICE quality standard also recommends that two separate multidisciplinary teams should be assigned to young people who are aged between 16 and 24. One team should have expertise in the specific cancer and the other of looking after teenagers and young adults. This is to bridge the gap between paediatric and adult cancer services, which will ensure that a young person's needs are fully met, a correct diagnosis is made and the most effective treatments are given.

Patients and their families and carers should also have their psychological and social needs assessed at key intervals and receive appropriate support, the NICE quality standard advises.

Catriona Ogilvy, Highly Specialist Occupational Therapist at the Royal Marsden NHS Foundation Trust, said: "The impact of cancer diagnosis and treatment is felt right across someone's life - particularly children and young people who have wide ranging educational, developmental and social needs. It is vitally important that this quality standard recognises the multidisciplinary team in cancer care, including occupational therapists and other AHPS, so that children, young people and their families can be supported at home and in their day to day lives."

The quality standard also says that children and young people should:

• Have their chemotherapy prescribed using an electronic prescribing system.
• Are assessed for potential future fertility problems and are advised about their options for fertility preservation before treatment is started.
• Receive an end-of-treatment summary and care plan that includes agreed follow-up and monitoring arrangements.
• Receive a specialist neuro-rehabilitation care package if the child or young person has had a central nervous system malignancy such as a brain tumour or lymphoma

Professor Gillian Leng added: "Cancer in children and young people is rare, but this does not mean we can afford to become complacent in the care and treatment of those with the disease.

"Childhood cancers are complex and early diagnosis can be challenging because cancers are rare and more diverse. The NICE recommendations - published together as a 'quality standard' - aim to co-ordinate services and raise standards in key areas so that children and young people, and their families and carers, receive excellent care wherever they live."

The NICE quality standard for children and young people with cancer is available to view on the NICE website and focuses on key areas of care for children and young people who have received a diagnosis of cancer. It does not make any recommendations on the referral of patients with suspected cancer.

Ends

For more information call the NICE press office on 0845 003 7782 or out of hours on 07775 583 813.

Notes to Editors

1. The NICE quality standard for children and young people with cancer will be available to view on the NICE website from Thursday 27 February 2014. Embargoed copies of the quality standard are available from the NICE press office on request.

2. NICE has also published a quality standard to help drive up standards of care for adults with metastatic spinal cord compression (MSCC). MSCC is caused by cancer and is normally a medical emergency.

Cancer statistics for children and young people

• Between 2008 and 2010 (the dates for which the most recent figures are available), 1,348 children aged up to 14-years-old and 1,835 teenagers and young adults (15- to 24-years-old) were diagnosed with cancer in England[ii].
• The survival rate for children's cancer has more than doubled since the 1960s. For every 10 children diagnosed with cancer, nearly eight (78%) will survive for five years or more, compared with just three in ten (28%) in the late 1960s[iii].
• More than 80% of teenagers and young adults diagnosed with cancer survive their disease for at least five years, according to data from 2001-2005[iv].

About NICE quality standards

NICE quality standards aim to help commissioners, health care professionals, social care and public health practitioners and service providers improve the quality of care that they deliver.

NICE quality standards are prioritised statements designed to drive measurable quality improvements within a particular area of health or care. There is an average of 6-8 statements in each quality standard.

Quality standards are derived from high quality evidence-based guidance, such as NICE guidance or guidance from NICE accredited sources, and are produced collaboratively with health care professionals, social care and public health practitioners, along with their partner organisations, patients, carers and service users.

NICE quality standards are not mandatory but they can be used for a wide range of purposes both locally and nationally. For example, patients and service users can use quality standards to help understand what high-quality care should include. Health care professionals and social care and public health practitioners can use quality standards to help deliver high quality care and treatment.

NICE quality standards are not requirements or targets, but the health and social care system is obliged to have regard to them in planning and delivering services, as part of a general duty to secure continuous improvement in quality.

Quality standard topics are formally referred to NICE by NHS England (an executive non-departmental public body, established in October 2012) for health-related areas, and by the Department of Health and Department for Education for areas such as social care and public health.

About NICE

The National Institute for Health and Care Excellence (NICE) is the independent body responsible for driving improvement and excellence in the health and social care system. We develop guidance, standards and information on high-quality health and social care. We also advise on ways to promote healthy living and prevent ill health.

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