Cancer Research UK worried by ‘trial gap’ for young Scottish patients

By The Press Association3rd November 2015News ScotlandCancer, Edinburgh / Lothians, News Scotland, Research, Young People / Youth Work, Youth Work

Young cancer patients in Scotland could be missing out on experimental treatments, with research showing less than a third of clinical trials are available north of the border.

Researchers in Edinburgh found there were 534 trials for new treatments in the UK which were suitable for 16 to 24-year-olds, but only 152 of these were available in Scotland.

Campaigners at Cancer Research UK branded the lack of trials for younger patients in Scotland “deeply worrying”.

The research, which is being presented at a National Cancer Research Institute (NCRI) conference in Liverpool, also found 19 of the 39 trials which could help sufferers under the age of 16 were available in Scotland.

Dr Angela Edgar, one of the authors of the study and chair of the NCRI teenage and young adults clinical studies group, said: “Our study confirms that children and young adults in Scotland have fewer clinical trials available to them compared to the rest of the UK. The reasons are likely to be complex but we need to close this ‘trial gap’.

“The most disadvantaged are 16-24-year-olds. There are fewer trials for them to begin with and, unlike younger children, they are often treated at centres where trial recruitment in this age group may be unfamiliar and overlooked.”

NCRI clinical research director Professor Matt Seymour said: “Compared with most countries, cancer patients in the UK are much more likely to be offered the chance to take part in clinical research as part of their treatment.

“Participating in research is a ‘win-win’: it brings direct benefits by ensuring you get access to modern treatment and intensive support; but it is also the best way to contribute to improving treatment for patients in the future.

“So, it is hugely important to highlight groups where we could do better and Dr Edgar’s study throws down a challenge to increase the access to research for young people in Scotland.”

Problems can arise when hospitals only treat a small number of young cancer patients as staff may not be used to recruiting this group for clinical trials, according to the NCRI.

It also said there was a lack of information about clinical trials available for younger sufferers, making it more difficult for hospitals to refer patients.

Professor Pam Kearns, Cancer Research UK’s expert on childhood cancers, said: “The shortage of trials available for young people in Scotland is deeply concerning.

“The opportunity for children and teenagers to get on to relevant clinical trials should not be dependent on how old they are or where they live. To address this gap, we need to understand the complex reasons behind why it happens.

“Despite improving survival rates, cancer is the main cause of death in children, teenagers and young adults in the UK.

“This is why Cancer Research UK is running a campaign called Kids & Teens which aims to fund more research in cancer in young people under 24.”

Scotland’s Health Secretary Shona Robison said: “The Scottish Government works hard to make clinical trials available to as many patients as possible who wish to participate, including teenagers and young people with cancer.

“Last year the Scottish Government-funded Scottish Cancer Research Network supported 343 cancer studies across Scotland, recruiting 6,782 cancer patients, including children and young adults.

“We will continue to work with the clinical research community to identify and remove any barriers to the participation of young people with cancer in clinical trials.”