Clinical trials & medical research

Young people's messages to health professionals

The majority of young people we talked to were pleased to have taken part in a clinical trial and other types of medical research. They said it was good that clinical trials involve young people and not just adults. For many of the young people we spoke to, taking part in a clinical trial helped them to understand their condition, as well as advancing knowledge, and helping others in the future. 
 
Both Joe aged 15, and Danny aged 13, were recently diagnosed with diabetes. It came as a shock to them and their families. Both took part in a randomised trial on interventions/approaches to support the self-management of diabetes for young people. Taking part has helped them better understand diabetes and how it affects them. They are both very keen that research continues to involve young people. Danny would like to take part in similar trials to help other young people who may be diagnosed with diabetes in the future. 
Young people we talked to said they were pleased with the care and support received from the research teams, doctors and nurses when they were in trials. The majority felt that everything about the trials including what it involved and any possible side effects, was explained to them, and there was always the option of coming out of the trial. Knowing that they could withdraw from a trial was very reassuring for young people. It was reassuring for young people and their parents to feel that their health always came first. (See also ‘Being invited to take part in a clinical trial: information and questions’.)
 
Some young people we talked to suggested ways to improve the experience of taking part in a trial. Suggestions included how information is presented to young people, making medicines easier to take, talking to young people at their level and being open and honest about side effects. Young people also wanted to know the results of trials, and that their contribution was valued by the research teams. (See also ‘Getting feedback and when the trial ends’.) 
Suggestions to improve information included information that is easy to read using simple explanations. Ryan, aged 12, has polyarthritis and is taking part in a randomised placebo controlled drug trial. He says that the information he received was too difficult for him to understand because it used too many ‘long words’. At the time he was too shy to ask questions because he didn’t know any of the doctors or nurses. He feels that the doctors and research teams should introduce themselves to young people first and explain what is involved in a trial more simply. 
Ryan took the information home and his mum helped him to understand what the trial was about and how it may help him and other children with polyarthritis in the future. Having information that is more at the child’s level might be better, including how procedures are explained.
Mohini, aged 12, declined to take part in a trial on treatment for cancer. (See also ‘Deciding not to take part although eligible to take part in a clinical trial’.) She feels that the doctors, nurses, and researchers need to communicate with young people and not just their parents. 
She also says that a key message researchers need to get across to young people is ‘safety’. Ensuring young people know that all drugs have been tested before being trialled is very important. If everything was known about the effects – wanted and unwanted – of treatments there would be no need for research. Treatment – whether given as part of a trial or not – always involves some uncertainties about its effects and this should be made clear to patients and prospective participants in trials designed to reduce the uncertainties. 
Hannah, aged 17, has had diabetes for 13 years and recently took part in a randomised trial to compare different approaches to the self-management of diabetes, such as diet. She was randomised to receive the usual way of informing young people about diabetes at her regular clinic appointments and is unaware of what the new way of informing people involved. However, she says it would be good to have group sessions or short courses on diabetes and to share experiences with other young people, from those newly diagnosed to those who have had diabetes for a long time.
Hannah also suggested alternative ways of giving diabetic information to young people' “Like maybe going out on activities and showing them like, maybe a trip to a science lab or something like showing you what happens. Just something a bit more interesting than reading it on paper; sometimes you need paperwork to be able to understand it. But I, some, I just feel like some younger people might not want, be interested in reading anything. Like both my younger cousins have got it and they probably don’t know what they’ve got or like how anything affects them.”
 
Sophie, aged 12, was diagnosed with Type 1 diabetes at the age of 3. She recently took part in a randomised trial to assess the value of an intervention for use by diabetes clinicians to help young people self-manage their condition. There was a mix of about 10 boys and girls attending the intervention which lasted a whole day. She remembers there was also a mix of conditions including diabetes, epilepsy, attention-deficit and hyperactivity disorder (ADHD). She says she really enjoyed the day and would like to attend similar days again in the future.
Sometimes taking medicines can be complicated, especially when there are lots of tablets involved that have to be taken at different times. (See also ‘What is involved in a trial' appointments and monitoring’ and ‘What is involved in a trial' time commitment, costs and payment’.) Joanna, aged 17, is taking part in a randomised placebo controlled drug trial for vasculitis. Along with extra tablets Joanna has to take a calcium drink that does not taste very nice.
Some young people we talked to would like the tests they have as part of the trial to be quicker. For example, both Jenna and Alexander are taking part in a randomised placebo controlled drug trial on improving treatment for arthritis. They both have certain tests done at their clinic appointments from which the information is sent to the trial organisers in another country. The pharmacy then waits for a response to ensure the correct dose of medicine is made up for them to take. Although Jenna says the system has improved it was a very slow process at the start of the trial. 
During the trial Alexander was preparing for his A levels. In addition to speeding up the process for test results and medicines to be made up he says it would be a good idea to have a quiet area for young people to do their school work. 
For other young people we interviewed, there seemed to be a lack of information about clinical trials in young people. They wanted to take part in a clinical trial and medical research but didn’t know how to get involved. They also wanted more accessible information about trials that have taken place and how it may influence future treatments. 
 
Sophie, aged 22, recently took part in a research study about blood sugar levels in people with cystic fibrosis. This was her first experience of being in a trial. She says there needs to be a source of accessible information of what trials are currently recruiting and what the eligibility criteria are.
Young people we interviewed suggested ways that health professionals and researchers could engage young people to take part in trials. Some young people said they would like to talk to other young people who have been in a trial (sharing experiences similar to youthhealthtalk.org), and others suggested using the resources of charities and having a specific web link for trial and research information.
Some young people we interviewed said they felt quite alone being part of a trial. They didn’t know anyone who had taken part in a trial of their age and rarely met other young people who were in the same trial. Sharing their experience of being in a trial with other young people was something young people would appreciate. Robert has cystic fibrosis and is advised not to mix with other young people with cystic fibrosis because of the risk of infection. So taking part in a trial for people with cystic fibrosis can be quite a lonely experience. He says that having a website where young people can share experiences of being in a trial might be quite fun.
Ryan, aged 12, has polyarthritis and would like to meet other young people of his age who are taking part in a trial and having similar treatments. He says he could help to reassure other young people who may be deciding whether to take part that it is ‘okay’.

However, some young people may prefer not to meet with other young people but just read or see other people’s experiences via a website (such as youthhealthtalk.org) for example. They also wanted to know that their contribution was valued by doctors and research teams and would like to know the progress of the trial. 
Many of the suggestions young people made for improving clinical trials applied to other forms of medical research too. Georgia aged 10, has been taking part in a research study on children with arthritis since she was six. She says she would like more information about what is happening and more information about her arthritis. She would also like the researchers to ask more questions about how arthritis affects young people.


Last reviewed March 2017.
Last update July 2014.

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