
"We believed that with the clinical trial, Katie had the best chance of recovery. Without these trials, amazing new treatments may never be found."
This study included young people between the ages of 10 to 23, including some who had cancer.
Those in the study either had a health condition or disease, or were healthy volunteers. They had all been asked to take part in a clinical trial.
Clinical trials are important to help doctors test new treatments and improve existing treatments. But it can be difficult to recruit children and young people into clinical trials.
The aim of the was to get a better understanding of the things that really affect young people’s lives when they are asked to take part in a clinical trial. And to find out which issues are most important to them.
Everyone in this study had an interview with a study researcher. The researcher asked young people about their experiences. The study hoped to understand more about the sort of information and support young people need.
This study was part of a larger research project looking at people’s experiences of clinical trials and other medical research. You can look at some of videos that formed part of this research and read more about the results on the healthtalk.org website.
The study team gained a deeper understanding of young people’s experiences of taking part in a clinical trial.
Young people were asked to be involved in this study in a variety of ways:
The study was also advertised through flyers in clinics, asking people to contact the study team if they were interested.
25 young people took part. 20 people had health conditions such as diabetes, cystic fibrosis, Graves’ disease or migraines. Four of the young people had cancer. Two people were healthy volunteers who had been asked to take part in trials involving a vaccine (to prevent certain illnesses).
Out of this 25:
Everyone was interviewed in their home by a researcher. These interviews were either video or audio recorded. The researchers asked the young people questions about how they were asked to take part in a trial. And, if they did become involved in a trial, what taking part was like.
They were asked:
The young people highlighted a number of reasons for taking part. The 2 main themes were:
Personal benefit
People gave different explanations for what they meant by personal benefit. These included:
Receiving some sort of reward for taking part in a trial was not an important theme amongst the young people. The rewards were usually small, such as a voucher or magazine. Two people said this was a reason for taking part. But they also said that they would still have taken part if no reward was offered.
Helping others
Most of the young people wanted to help others as well as themselves. For a few people, their only motivation to take part was to benefit others.
For example, they wanted to help people in the future, or other people they knew who had the same disease. Some people wanted to take part in order to help their doctors, or to help their parents.
Some felt it was important to be part of research in return for all the support and care they have had.
Young people’s recommendations
The young people interviewed offered the following recommendations:
Researcher’s recommendations
To improve recruitment into trials the researchers recommended that doctors and nurses:
The researchers pointed out that doctors or nurses are sometimes reluctant to tell the child or their parents about a possible trial. This might be because of concerns that:
The results of the interviews suggested that these concerns were unnecessary.
The study team found that the young people in this study were very aware that the research might not benefit them. And that they might be in the control group having standard treatment, or no treatment.
They wanted to have the opportunity to consider trials, if this was an option.
Future research
The researchers recognised that the majority of people taking part in this study had agreed to take part in a clinical trial. They recommend that future research looks at the reasons why some young people do, and some do not, decide to be part of a trial.
The healthtalk website also has information about parent’s experiences of their children taking part in clinical trials.
We have based this summary on information from the research team. The information they sent us has been reviewed by independent specialists () and published in a medical journal. The figures we quote above were provided by the trial team who did the research. We have not analysed the data ourselves.
Please note: In order to join a trial you will need to discuss it with your doctor, unless otherwise specified.
Dr Lesley Powell
National Institute for Health Research (NIHR)
University of Oxford
Freephone 0808 800 4040
"We believed that with the clinical trial, Katie had the best chance of recovery. Without these trials, amazing new treatments may never be found."