A-Z

Clinical trials & medical research (young people)

Young people's messages to other young people

Overall young people we talked to were pleased to have taken part in a trial. They felt they had had a good experience and most felt they had benefited from taking part, in a range of ways – for example learning more about their condition, feeling they’d helped others and sometimes improving their own health. Many said they would consider taking part in another similar trial if the opportunity was offered. (See also ‘Views on future trials’.) 

Taking part in a clinical trial is an important decision. Based on their experience, young people had messages for other young people who may be thinking of taking part, such as getting plenty of information and asking questions, getting other people’s opinions, being clear about any side effects, knowing what is involved and what is expected of you, and being open to the possibility of taking part. 

Sophie,aged 22, has cystic fibrosis. She says it is a big commitment to take part in a trial and there are lots of things to consider. When a trial involves allocation (randomisation) to one of the two or more treatment groups it can be a difficult decision to make.

 

Taking part in any research is a big decision for young people to make. Sophie says you need to be prepared to end up in the control group ' but you will still be helping improve understanding of the condition.

View full profile
Age at interview: 23
Sex: Female
SHOW TEXT VERSION
PRINT TRANSCRIPT
Yeah, I say that taking part in research and clinical trials. There is quite a lot to think about and to consider, and for example, I suppose one of the big things is that you could be selected and you could have the placebo. So you may think that you’re taking part, for example, in the gene therapy trials if I had been selected or if I had chosen to take part in those trials, it’s I’m sure it’s a big undertaking and a big decision to make and a big commitment and it may have been for however long the trial lasts, every time you go to the hospital to receive what you think is gene therapy you may actually just be getting, you know, a blank copy of everything because you have to have that in a study. So you might be putting yourself through so much and hopefully thinking you’re going to have the benefit at the end of it but you may actually just be like the control. So that would be something you have got to consider that you know there are going to be people which aren’t actually receiving the drug or the treatment and that’s something you need to be aware of and that should be explained clearly.
 
But I think the main thing is thinking about, although it may be a time investment for you, or it may be something extra you have to do every day for a few days or a week or even a month, or a couple of months, think of how much it’s going to help people with your condition in the future, and think how much although you’re investing your time and effort into it, it will save whatever you’re doing could potentially like either save lives or save people time or give them you know longer to live in what you’re doing. So in the short term it may feel like a big undertaking but in the long term what you’re doing is yeah and even if you are a control in the study you’re still, they still, they need those people and it you’re still benefiting others in such a good way. I can imagine you may feel quite disappointed if you find out after that you have been used as a control or had that placebo but it’s, you’re still very much an important participant.

 

In most clinical trials you will be allocated (randomised) to one of two or more treatment comparison groups. It is important that you understand what this means if you decide to take part. (See also ‘Why do we have clinical trials in children and young people’ and Understanding allocation (randomisation) to a treatment comparison group.) 

Robert, aged 22, has cystic fibrosis. He has taken part in several trials. Recently he took part in a Phase 1 Gene Therapy trial and is hoping he can go on to the next stage. (See ‘Why do we have clinical trials in children and young people and ‘Different types of trials’.) He says that sometimes you have to think about the bigger picture and that taking part in a trial is going to help others with your condition in the future. 

 

There may be no immediate benefit from taking part in a trial says Robert, but you may be helping...

View full profile
Sex: Male
SHOW TEXT VERSION
PRINT TRANSCRIPT

Yes, well I guess I’d say I don’t know I guess to try and, even if it’s a trial that you might not benefit so much from, to try and see past that and see, you know, as a person with Cystic Fibrosis, you know, we are a community as it were. And to look out for your fellow people in that community and the people yet to come in future generations so because you can’t get a person without Cystic Fibrosis to do a trial that needs a person with Cystic Fibrosis. So it’s a responsibility in a way yes. 

Until well-designed trials have been carried out, we simply do not have enough evidence to know the effects of treatments – wanted and unwanted. Without trials, there is a risk that people will be given treatments which do not work and which may be harmful. 

Sophie, aged 23,  talks about how she has benefited from the contribution of others in the past who have taken part in clinical trials to help improve treatment for cystic fibrosis. Like Robert, she says that taking part may not benefit you immediately but it may help you and others in the future and this is something young people need to consider when making a decision to take part in a trial.

 

Sophie talks about how treatment has really improved for people with cystic fibrosis and this is...

View full profile
Age at interview: 23
Sex: Female
SHOW TEXT VERSION
PRINT TRANSCRIPT

And I think it’s for young people you have to realise that in order for things to develop and for progression to be made, like since, I can’t even describe the difference in like my treatments from when I was diagnosed at the age of eight to now when I’m twenty two. And like one of my friends was round last night and he looked and said “Is that your nebuliser” he said “Do you remember when you were like ten years old and it was like this big and you had to have tubes going out of the window and you had to have all this and it took like twenty, thirty minutes if not longer per session and now it’s about that big and it takes two minutes” and he’s just like, I can’t believe the difference. And all that’s come from clinical trials and from research being done. And you know the different ways, my treatments that I do now are very different from the ones that I had when I was eight years old. And without people taking part in research none of that would have been able to have, you know, have been developed and I would still be stuck doing

The huge nebuliser?

  Yeah and the solution which I use now to help me loosen my mucus in the morning that wasn’t available when I was first diagnosed and that’s been developed through research and trials. And now I don’t think I could cope without it. So I don’t, it’s just you know the benefits of taking part although you may think on a personal level it might not benefit you immediately, in the future it will and it’s not just going to benefit you but so many people.  

Mohini, aged 12, decided not to take part in a trial involving intensive treatment for cancer. (See ‘Deciding not to take part although eligible to take part in a clinical trial’.) Taking the decision to take part in a clinical trial requires lots of thought about what it involves, how it may benefit you, and how it may benefit other young people in the future. 

 

Mohini says that taking part in a trial that involves intensive treatment is a real commitment to...

View full profile
Age at interview: 12
Sex: Female
Age at diagnosis: 9
SHOW TEXT VERSION
PRINT TRANSCRIPT
Do you think it’s important that children do take part in trials?
 
Yes it’s taking a risk on your life so; in the grand scale of things it’s taking a risk on your life so other children in the future don’t have to take a risk like that. And it’s whether you’re willing to make that sacrifice.
 
And that sounds really hypocritical because I didn’t make that sacrifice but still.
 
No but you made a decision and that’s, it was a good, that was your decision and I think...
 
I mean I consider that, I mean people; I mean children would be quite reluctant to take that risk. But they’ve got to understand that these drugs have been tested in other ways, they’ve been tested on healthy people first so it’s not like they’ve just randomly produced a drug and they’re giving it to you, there have been tests done before so they know it’s a fairly safe drug. And that’s the key message that doctors need to get......
 
Get across to young people that they’re safe?
 
Yes, that they will do everything in their power to keep them safe.
 
That’s very important.
 
And safety to a child is a big deal. It’s like feeling safe in your own home; it’s like feeling safe with your family.

 

Children and young people may need different treatments from those appropriate for adults because they are at a different stage of development. Clinical trials in children are therefore essential to ensure they receive appropriate, safe and effective treatments and care. There are guidelines to protect children who take part in clinical trials of medicines in the UK and throughout the European Union (EU). (See ‘Why do we have clinical trials in children and young people.)

Some of the young people we talked to said that taking part in research helped them to better understand their health condition, and at the same time they were contributing to knowledge about the condition and its treatment. 

 

Being in a trial has helped Danny better understand how to cope with diabetes at home and at...

View full profile
Age at interview: 13
Sex: Male
Age at diagnosis: 4
SHOW TEXT VERSION
PRINT TRANSCRIPT

I’d say definitely take part. Don’t like, don’t hesitate about it, because it’s, it will definitely help you. And plus you get a reward. So it’s good as well in that way. And it could help other people that have just been diagnosed. Because the hospitals, they give a, quite a lot of information, but they don’t go into loads of detail about like how you’re going to cope with it at school or at home. So they could just like because that trial could really help them when they’re at home if they’re like struggling or they’re forgetting to do blood tests. And, and if they’re always feeling ill they can just, say, say if you’ve got like problems with the diabetes, if you’ve done that trial it will definitely help you with them. So then you know for the future. 

 

Having a diagnosis of diabetes came as a shock to Joe and his family; taking part in a trial...

View full profile
Age at interview: 15
Sex: Male
Age at diagnosis: 15
SHOW TEXT VERSION
PRINT TRANSCRIPT
Yes, I’d say to them, “Definitely take part.” Just, I’d say, “Even if you do, even if you just think, ‘Oh, no, that’s nothing to do with me.’” It’s like I’d say, “Even it, it helps, it helps every, everyone trying to get over it and get used to it.”
 
Because everyone who gets diagnosed and didn’t know, it’s a big big shock to them, and just a different, change of lifestyle. And taking part in research, it’s not only helping themselves, it’s helping everyone to deal with it. Y
 
Mum' It’s very positive, isn’t it?
 
Yes, it just, yes, it gets you through it and makes you think, “At least I’m helping other people as well.” So, yes, I think it’s, I think the research is brilliant.

Yes, I was going to say something. Yes, I think I was going to say, yes, to, to people who’ve got it or got any long-term illness, I would say, “As soon as you get it, you, you, you, you have the thought like, ‘Oh’ like, ‘Oh, I can’t, like, you know, I can’t be bothered’ and, ‘Why is it happening to me?’ But like, you know, it’s just, just the way things go.” And I’d just say, “Just carry on and fight through it, because it’s not the end of the world.” Which, you’ve got to be a strong-minded person. If you‘re, the more strong-minded you are the easier it is to get through it. That’s all.

 

 

Kerenza enjoyed completing the questionnaires as part of a research study. She learnt more about...

View full profile
Age at interview: 15
Sex: Female
Age at diagnosis: 7
SHOW TEXT VERSION
PRINT TRANSCRIPT
Well I just think that it’s a good thing to do because it does make you understand more, you know, like what, why, why you may have it and stuff because obviously the options are like obviously there was one which is actually the proper reason why, so it does make you understand a bit more of it. You know other people have it and they think of like this type of thing. I just really enjoy filling in because I know that other people have to fill them in it's not just me. Because I know that they get sent off to like 100s of other people that have the same problem as I do.
 
Does that make you feel like you’re contributing?
 
Yes.
 
Yes, so that makes you feel a bit easier really, you’re not alone?
 
Yes.
 
I think that, I think it’s good because obviously they could help others which is helping themselves. So I think it is a good thing to do but obviously like people don’t have to do it obviously if they don’t want to then that’s fine but you know like people are like oh I guess I could it is a good thing to do type of thing.

 

Georgia, aged 10, says it is good to take part in research because she can tell the health professionals how arthritis affects her and then they can help other children with arthritis.

 

Helping other children with arthritis was a key reason for Georgia to take part in a research study.

View full profile
Age at interview: 10
Sex: Female
SHOW TEXT VERSION
PRINT TRANSCRIPT
Well I’d say I’ve got like I told them that I’ve got arthritis and they go what’s that and I go well that’s where you’ve got pains in your body and like I’ve got it in all my joints. That’s when. and I told them I was in a clinical trial after I got told and they went what’s that and I went well it’s like when you’re part of like a programme and you get asked questions and sometimes you get interviewed and people talk to you and ask you, give you sheets to fill in.
 
And did it make you feel good to take part?
 
Yes. Because then I could tell people like what it’s like to have arthritis and I’ve got arthritis.

 

When you are invited to take part in a trial, it is important to receive adequate information. This may be in the form of a leaflet or booklet and the doctors or nurses may talk to you to explain the trial and answer any questions you may have. (See also ‘Being invited to take part in a clinical trial: information and questions.) Young people we talked to said it was important to get plenty of information and even ask the opinion and advice of family and friends. Alexander says, if there are long and complicated terms, it is better to ask than searching on the internet. 

 

Alexander says if you are going to take part in a trial make sure you understand the jargon that...

View full profile
Age at interview: 18
Sex: Male
Age at diagnosis: 16
SHOW TEXT VERSION
PRINT TRANSCRIPT

Get as many opinions as you physically can, not just from your doctor. If you have a family friend who knows about this kind of stuff, speak to them about it. Because the jargon they give you is horrific. Googling, dictionaries don’t have half of it. So you do really have to know what you’re on about. Certain people swear by their drug trials. Some people go, “No.” I’m still kind of undecided. I’m hoping for the best. And maybe nothing will come out of it. Something may come out of it completely. It’s a really open sort of thing. So keep your mind wide and give it a go, if you have to. 

 

If there is anything that you do not understand Stephanie suggests that you should always ask the...

View full profile
Age at interview: 18
Sex: Female
Age at diagnosis: 15
SHOW TEXT VERSION
PRINT TRANSCRIPT
In terms of the terms like clinical trial, were there any terms that they used that you didn’t understand?
 
Not really. The fact that I can’t pronounce the name of the drug maybe. But that’s not really their fault. No, there wasn’t really like, there are times that you do feel a bit like way out of your depth. But it’s usually when doctor's kind of talk among themselves in front of you about you, and you just feel a bit kind of weird. You feel like you’re not really in the room. It is a bit strange. But there was never kind of a conversation I was meant to be part of that I didn’t understand. And if, you know, if there wasn’t something, if there was something I didn’t understand, I’d just be like, “I don’t know what that is. You’ll have to explain it in normal people terms, not doctor terms.”
 
So you would, you would ask?
 
Yes.

 

Several young people said it was important to ensure that side effects were explained and that you could drop out or stop the trial if you wanted to. 

 

Having all the known side effects explained was reassuring for Jenna.

View full profile
Age at interview: 13
Sex: Female
Age at diagnosis: 11
SHOW TEXT VERSION
PRINT TRANSCRIPT

Well, it’s like you know everything, so nothing’s like hidden. They don’t… Because like during the trial there was a woman, like an older woman on it and she died. And they like came and told you. And they said that she was on a lot of other medicines and she was like quite ill, so there was a lot of ways she could have died. But it wasn’t necessarily that. So they don’t like sort of keep everything hidden. And they’re all really friendly and nice and look after you. So it’s quite good. 

 

Kay advises to get as much information as possible about a trial before taking a decision to take...

View full profile
Age at interview: 23
Sex: Female
SHOW TEXT VERSION
PRINT TRANSCRIPT
Just get as much information as you can. Reasons, pros and cons for getting involved, how is it going to benefit you, will you get reimbursed for travel expenses, can you can you drop out at any point. You know what are the side effects? If you know if you do get these side effects can they treated quite easily. Yeah, just get as much information as you can just be fully informed of the drug, well it depends what item if it’s a medication just get as much information as you can about it, on duration of it, just yeah just be fully informed, fully informed on everything.

 

 

Lauren says it is important to ask ‘why am I taking part and do I want to take part?’ It is also...

View full profile
Age at interview: 16
Sex: Female
Age at diagnosis: 13
SHOW TEXT VERSION
PRINT TRANSCRIPT
I don’t know. You, “Ask questions about it and just make sure that you’d want to do it before you took part.” But never be afraid, because they’re actually very nice. Because sometimes you get a really big reward that you’re doing it, because of it. So it’s a nice thing to do. But at the same time you’ve just got to think, “Would I like to do it? And if I don’t, well, then…” Just, you can also ask if, like we asked, “If, if I didn’t want to take part, was there anything else we could do?” because we didn’t want to do it. But in the end I took part, so I didn’t do anything else for that. But, I don’t know, “Go for if you want to. But if you don’t, it’s not a huge problem at all.”

If you were going to ask a young person a question about their experience of taking part in a trial, like I’m doing, because you know what it’s like and you’ve got some insight, information, is there something that you would want to ask them?
 
I’d, I would want to ask them whether they’re enjoying themselves doing the trial. Because I find if you’re not enjoying yourself doing the trial, you’re not, you’re not putting your kind of like full effort in to it and it’s not going to, your results may not come back right. And if you’re not enjoying it, “Why are you doing it if you’re….?” So I think whether they’re enjoying it would be a good question. Because I think having fun with doing anything, like having fun doing homework is really weird, but if you’re having fun doing your homework you enjoy it much more. So, and that takes your mind off other things.
 
And do you enjoy…?
 
Yes, I do, I do. I have no idea why. But I like going up the hospital and, because they’re always, like sometimes I go to a university or sometimes I go to the hospital, depending, and that would be like, “Oh.” So, and you check out all these new surroundings that you’ve never seen before. And it’s just like, “Oh, I quite like this.”
 
So it’s all kind of new? So you’ve gained a lot from it? Do you think you know if there was anything you’d gained from it, what do you feel you’ve gained?
 
I’ve obviously gained confidence. Because I could, I, although when I know someone I can be quite weird and I come out with random things, but I can’t speak directly to people if I don’t know them. I’m quite shy and I like to hide away. But because I do the trials and I have to talk with all these people I don’t know about sort of personal stuff, but, or it is personal but it’s not, it doesn’t really bother me. But I kind of get more confidence out of it in a way. So I feel that’s kind of helped me.

 

Taking part in a trial may involve extra hospital appointments, taking extra medication, having extra tests, keeping a diary or completing questionnaires. It is important to know what is involved in a trial and what is expected of you. (See also What is involved in a trial: appointments and monitoring’ and ‘What is involved in a trial: time commitment, costs and payment.’) 

Joanna took part in a randomised placebo controlled drug trial. She had to take extra medication and had to be quite organised otherwise she would forget to take it. 

 

When a trial involves extra medicines and tablets, being organised and committed to completing...

View full profile
Age at interview: 17
Sex: Female
Age at diagnosis: 16
SHOW TEXT VERSION
PRINT TRANSCRIPT

Don’t do it if you’re very forgetful. Because it won’t help yourself or the trial. And you’ve just got to be motivated to do it. Otherwise you just will forget or you won’t be bothered to take it or things like that. Because it is quite difficult being, it may not sound it, but sitting up for half an hour having something to do when you just want to go to sleep is not the best thing. So, yes. 

Several young people we interviewed wanted to say how helpful and supportive the doctors, nurses and research teams were during the trial. They wanted to say that you shouldn’t be worried to take part because they are always there to answer any questions or if you have any concerns.

Last reviewed March 2017.
Last updated July 2014.
 

donate
Previous Page
Next Page