Rates of inclusion of teenagers and young adults in England into National Cancer Research Network clinical trials

27/11/08

Report from the National Cancer Research Institute (NCRI) Teenage and Young Adult Clinical Studies Development Group

Poor inclusion rates into clinical trials for teenagers and young adults (TYA; aged 13–24 years) have been assumed but not systematically investigated in England. We analysed accrual rates (AR) from 1 April 2005 up to 31 March 2007 to National Cancer Research Network (NCRN) Phase III trials for the commonest tumour types occurring in TYA and children: leukaemia, lymphoma, brain and central nervous system, bone sarcomas and male germ cell tumours. AR for 2005–2007 were 43.2% for patients aged 10–14 years, 25.2% for patients aged 15–19 years, and 13.1% for patients aged 20–24 years in the tumour types analysed.

Compared with accrual from 1 April 2005 to 31 March 2006, AR between 1 April 2006 and 31 March 2007 increased for those aged 10–14 and 15–19 years, but fell for those aged 20–24 years. AR varied considerably among cancer types. Despite four trials being available, patients over 16 years with central nervous system tumours were not recruited.

Rates of participation in clinical trials in England from 2005 to 2007 were much lower for TYA older than 15 years compared with children and younger teenagers. The variations in open trials, trial age eligibility criteria and extent of trial activation in treatment centres in part explain this observation.

Other possible influences, such as difficulties associated with the consent of TYA require further evaluation. Closer dialogue between those involved in planning and running trials for children and for adults is necessary to improve trial availability and recruitment.

Further research is required to identify trends in trial availability and accrual for those tumours constituting the remaining 26% of TYA cancers.

British Journal of Cancer advance online publication, 25 November 2008; doi:10.1038/sj.bjc.6604751 www.bjcancer.com & 2008 Cancer Research UK

Simon Davies, Chief Executive of Teenage Cancer Trust one of the authors of the study commented:

“Teenage Cancer Trust would really like to see the number of teenage and young adult patients going into trials doubled over the next five years. Young people are constantly falling through the gap between paediatric and adult cancer specialists and there are not enough trials for the types of cancers that affect them. But for the ones that do exist, often the age range excludes them from being treated. In too many cases they are simply not offered the choice of entering a trial. So it’s vital that doctors learn to communicate very clearly, the real benefits and of course the risks of being treated in a clinical trial. In medicine the gold standard for identifying what really is the best option comes from randomised clinical trials.

“Teenage Cancer Trust recognises that progress is being made. Clinicians are already working to close the gap between the protocols for child and adult trials so that young people can qualify. Teenage Cancer Trust also believes that more research into teenage and young adult cancers, with collaboration on a national and international level, especially for the rarest forms of cancer.”

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