A study looking at the experiences of young people who were asked to take part in a clinical trial

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:  

• by the health professionals looking after them
• through support organisations 
• word of mouth 

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: 

• some of the young people had taken part in more than one trial
• 1 person decided not to take part in a trial after being invited
• 1 person withdrew from the trial they were taking part in

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:

• what they thought and felt at different points 
• what information they received and how
• the good and bad parts of the whole experience

The young people highlighted a number of reasons for taking part. The 2 main themes were:

• personal benefit
• helping others

Personal benefit 
People gave different explanations for what they meant by personal benefit. These included:

• health benefit - access to new treatments or different ways of having treatment 
• wanting to gain a better understanding of their condition
• helping them come to terms with their condition
• a belief that it would lead to more attention from health professionals and better care
• feeling good about themselves – feeling more in control and improving self esteem

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:

• health professionals should do more clinical trials involving children and young people
• health professionals should offer trials to children if there are suitable trials 
• provide a protected website where young people can learn about the clinical trials going on and express their interest in taking part 
• this website could be a place where young people can share their experiences and talk to other people taking part in similar research
• tell people about the results of a trial as soon as possible and to let them know if their involvement in a trial has helped 

Researcher’s recommendations
To improve recruitment into trials the researchers recommended that doctors and nurses:

• be more open with young people about trials that are going on and whether they might be eligible 
• provide better information to young people and parents about trials and research. One way of doing this might be to have a website providing information about past and present trials
• give young people feedback about trial results 

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 family will be burdened with a difficult decision. 
• they might not understand the risks and benefits of research

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 (peer reviewed ) 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.