We asked young people if they would consider taking part in another clinical trial if the opportunity was offered. The majority of young people we interviewed said they would take part in other trials similar to the one they had taken part in. Some young people said that if the trial involved a change to their treatment or if it was a drug trial then they would give this more thought. They would consider the risk and benefit to themselves and the wider benefits of the trial for other young people and medical research.
Lauren is taking part in a trial on improving the treatment for diabetes. The purpose of the trial is to see whether the background insulin used alongside a carbohydrate diet has any side effects among young teenage girls.
Lauren is aged 16, White British and lives with her parents and sibling at home. Lauren attends a local high school and was diagnosed with Type 1 diabetes at the age of 13.
And would you take part in another, another trial?
I would actually. I know, because one of the reasons
is because I’ve always been brought up with doing these trials. I’ve done
diff-, loads and loads because of my mum. And my mum would no doubt pick up
another trial leaflets halfway through and just go, “Hey, Lauren, would you
like to try this?” And I’d be like, “Yes, let’s try it.” Just because I like
the idea of trying things and, because it’s always about trial, trial and
error. And it’s just, “What do you prefer?” and, “Would it make my lifestyle
easier if I done this?” Because I used to have a lot of trouble. When I first
got it I used to, I used to love doing my injections. Which is really weird.
And I was like, “Oh, I’ve done my injection, yes.” But then I went, going,
“Actually I don’t like doing the injections” and I used to skip doing
injections. I’m very good now. I do my injections. But when I did skip them, it
was just like, “I don’t want this anymore. I want it to go away.” Just, and
then just like, but I do like the idea of doing trials. They always excite me.
I mean is, is it that, what is it that excites you? Is
it the fact that just there’s something possibly new?
Yes, the idea of like doing something new and the fact
that you’re like just trying something. And it’s just like, like, “Guys, I’m
on, I’m on this trial.” And they’re all really interested, my friends. I’m
like, “Hey guys, I’m doing this like trial thing” and they’re like, “Oh, cool.
Tell us more.” And it’s just like, “Oh, I can tell them about this” and I feel
really like quite special. I don’t know why, weird child I am.
I think that’s good, because I think one or two young
people have said it’s nice because you feel a bit special.
Yes, you kind of feel like, the reason, because you’ve
got this like horrible thing, you’re actually doing something good for, you,
you’re doing something good for it. And it’s kind of, you kind of think better
about it than what you did. Because I used to, I used to, “I hate it.” But
because of doing the trials I’ve, I’ve learnt to accept it so much better than
I think I would have done if I didn’t do the trials. And it’s kind of put,
“Well, I can now help others if I want to or if I can” kind of thing.
Was there, is there any point when you perhaps would
stop or not take part in a trial?
If I wanted to stop, my reasons would have to be I
didn’t trust the people who I, like I was with, I didn’t like how I was being
told to do things or being treated, and, and I didn’t feel comfortable doing
the trial. All those things, I would not do the trial. Because I feel like I
need to trust them, I need to know what I’m doing, and if I didn’t feel
comfortable doing it I just couldn’t do it, I just wouldn’t be able to do it.
Hannah, aged 17, was diagnosed with diabetes at the age of 4. She recently took part in a randomised trial comparing different approaches to self-management of diabetes, including diet. Hannah is keen to help other young people with diabetes and would consider taking part in trials that involve a change to her treatment as long as all known side effects were explained and it was safe to take part.
Hannah is 17 years of age, is White British, goes to a local high school, and lives at home with her parents. Hannah was diagnosed with diabetes at the age of four years.
If the trial had been something more different, about changing perhaps your treatment, would you?
I’d probably be more interested in that.
You’d be more interested?
You’d be still keen to take part in something that was more treatment based?
I definitely think, yes, I think that if they’ve got any like new treatments coming out then I’d be interested to find out more about them and anything like that.
Would it, would it depend perhaps on the side effects and things like that?
Yes, you would need to know, yes. Side effects would be a thing to consider.
Perhaps you might discuss it with your parents?
Yes, that’s more what I’d discuss with my parents.
But you’d still be keen to take part?
I think that’s an important…
…message to get across really, that, you know, young people do want to take part.
Yes, I think anything to do with diabetes, I’m happy to do anything. There isn’t a lot of people that know exactly about it. I know you can learn, you have to learn about it in like some biology lessons, but you don’t go in to great detail about how it affects people.
Joe, aged 15, was recently diagnosed with diabetes and is keen to help advance knowledge and others’ understanding of the condition. Even though he doesn’t want to miss school or going out with friends he still thinks taking part in a trial and helping research is a good thing to do.
Joe aged 15 is White British and lives at home with his parents and siblings. Joe attends a local school and enjoys football and going out with friends. He was diagnosed with diabetes one year ago.
Joe' I mean I wouldn’t be bothered about taking part in a trial, because it, as I say, it’s helping other people to understand. As long as it wouldn’t have any like serious effects on me, then, yes, I’d be happy to take part. And as long as I’m being watched by nurses and stuff if they changed my medication. But, yes, I’d be happy to take part in most things.
Just as long as you understood it all and…
Joe' Yes, got told about everything and understood it.
…safety was there?
Mum' Yes, yes.
That’s good to hear. I think that clinicians would like to hear that. Would there be any sort of barriers, you know things that might stop you from taking part in a clinical trial? For example, when you start leaving school and social life and...
Joe' Yes, I mean I’d be happy to take part in a trial as long as it’s helping people. But if, I wouldn’t like to be, if I, like how can I put it? Like, you know, when I’m, if I am at that age where I want to go out with my friends and stuff, and I would rather sometimes like go out with my friends rather than do the research and stuff. But, yes, I’d be happy to take part in any trial really.
It’s just sometimes, you know, sometimes there might be something… It’s interesting to know why young people might not want to take part really. If there was something that...
Mum' The thing is though, I think there’s always a way round that, isn’t there? With, like what time you would do or how you would, because, you know, you’re not out with friends constantly.
Joe' No, I don’t really think, I don’t really think there is a barrier to anyone why they shouldn’t like take part in any research, because it’s just,
Mum' It’s all for the good, isn’t it?
Yes, yes, exactly, it’s all for the good. And like even though they, they, everyone has a social life and, you can just reschedule, can’t you? There’s nothing to, I don’t think there’s any age where you, you can say, “No, I don’t, you know, I’m too old for it” or anything because, yes.
Jhon, aged 13, has osteogenesis imperfecta. Osteogenesis imperfecta is a genetic condition in which bones break easily. When Jhon was born his parents agreed to take part in a lung and asthma research study that involves completing annual questionnaires. His parents still complete the questionnaires that ask about Jhon’s health. More recently Jhon took part in the second stage of the research which involved a series of allergy tests. The tests were carried out at his school. He has not taken part in a clinical trial yet but he is keen to help advance medical knowledge and other young people. (See ‘Other types of medical research’.)
Jhon, aged 13 is White British, lives with his parents and attends Secondary School. He enjoys 'making a difference', swimming, reading and being with friends. Jhon was diagnosed with Osteogenesis Imperfecta in the womb.
I think sort of as long as it wasn’t something that really did have big risks, sort of then, yes, I’d get involved. Obviously there’s a risk with everything, but as long as it wasn’t something like really risky, then.
When you say risky, do you mean in terms of your health?
Yes. Sort of as long as they’re, they’re pretty sure sort of they’re heading in the right route and it’s just sort of those final tests and stuff, then, yes, I think I would go ahead with it.
As well as thinking about safety, young people we talked to thought about the practical issues involved in taking part. Some young people said they would take part in trials similar to the one they had taken part in if their parents were happy and the trial didn’t take up too much time. Jenna, aged 13, was diagnosed with poly-articular idiopathic juvenile arthritis at the age of 11. She is taking part in a randomised placebo controlled drug trial and would be happy to take part in a similar trial in the future if it was convenient for her parents. (See ‘Why do we have clinical trials in children and young people’ for an explanation of the different types of trials.)
Jenna is 13 years of age and attends her local senior school. She lives with her parents and her younger sister. Jenna was diagnosed with polyarticular idiopathic juvenile arthritis at the age of 11 years.
So if you were invited to take part in another clinical trial, would you?
If it was like similar to the one I’m doing now and not have to take a long time, I probably would. And if mum wanted to do it, because like it, she has to sort of take time off work and stuff.
Some young people we interviewed were unsure about taking part in future trials because of starting a new job and social commitments. Kay, aged 23, was diagnosed with cystic fibrosis at 2 months of age. She has taken part in two randomised placebo controlled drug trials. Even though Kay is unsure about future trials due to her work and social life she feels that young people should ‘grab’ the opportunity to take part in a trial ‘with both hands’ if it is on offer.
Kay is 23 years of age and was diagnosed with cystic fibrosis at the age of two months and Diabetes at age 18 years. Kay lives with her parents, works part time for a charity, describes herself as Welsh and has an older sister who lives away from home.
I think if you’re offered something that’s possibly going to be beneficial then I think it is important to grab it with both hands. Because it’s good and it means that if there are new medications that are coming for the other CF [cystic fibrosis] patients, they might consider me if I’ve been quite compliant with clinical trials that have happened before so, no I think it’s good.
I assuming from that that if they ask you to take part in another one you would?
Possibly. My work commitments and social commitments are getting quite a lot at the moment but if I do have the time I think that’s another thing, I have, I have got time at the moment so that’s another reason why I’m quite happy to help out. But work schedules get quite busy so we’ll see.
So it might depend on how, what the involvement is?
And the level of the involvement?
Yeah. Yeah I think yeah I’ve got quite a lot of like with this job it means that I can do, I am like allowed to take time out for appointments and things whereas you know if I do get another job I might not have the opportunity to do that, so.
Robert, aged 22, was diagnosed with cystic fibrosis soon after birth. He has always taken part in clinical trials ranging from one day to one month and longer. Robert is keen to advance knowledge about cystic fibrosis to improve treatment and care for others in the future. However, now that he has finished university and started work he says he will have to think about what is involved and the time commitment before agreeing to take part in other trials.
Robert, aged 22, was diagnosed with cystic fibrosis soon after birth. He recently graduated from the University of Oxford in Mathematics and Statistics and would like a career in Medical Statistics. He starts work as a Maths teacher very soon.
It will be interesting now that because before I’ve always been a student so, you know. If I take part in a trial then, you know, say something does go wrong then you can always take a year out or, you know re sit an exam or whatever. Whereas now I’m moving into the world of work so I’ve, well I have an extra, being a teacher as well, I’ll have to factor that into my decision of what trials to take part in and how involved they are and what the risks might be.
Sometimes a trial may require you to take extra medication, have extra tests at the hospital, and complete diaries at home. (See also ‘What is involved in a trial' appointments and monitoring’.) You may have to miss going out with friends or other social activities. Sometimes being in a trial may mean taking time from school and doing extra homework to catch up. Alexander aged 18 is taking part in a randomised placebo controlled drug trial for the treatment of arthritis, but is unsure about taking part in another drug trial if it was offered.
Alexander aged 18, is White British and lives with his mum. He was diagnosed with systemic juvenile polyarthritis at the age of 16. Because of poor health and taking part in the trial he is going to re-sit his A levels.
you take part in another drug trial?
Not if it was not needed. If that makes sense. If it
had to be done, yes, I would. But out of choice I don’t think anyone would ever
take out another drugs trial, because there is so much messing around and so
much answering to everything you do. It’s quite frustrating going, “Yes, I want
to go out.” “Oh, you have to check the trial now.” So, yes, that’s…
And in terms of school and things like that, how does
that fit in?
It does kind of knock it down a bit because you do
have to really work out what’s going on with the school. Because you will miss
a couple of days once you’ve taken the drug because you do feel horrific. You
don’t want to be dealing with Philosophy or English. So you struggle on and
then, so you do miss a couple of days out. And then if you do get ill you have
to go back to hospital. So you do kind of feel like you’re not getting a fair
c- whip of the –
Crack of the whip [laughter].
Yes, so you kind of have to work around that. So you
do work five times harder than, well, five, a couple of times harder than
everyone else. And they’ll be going out, going out to the pub or anything and
you’ll be, really kind of wanting to do it, but you have to kind of catch up.
And even if you do catch up, people will still be doing better, and they’re
doing less than you. So it’s a bit on the frustrating side but you have to
learn to deal with it.
Some young people said they were unsure about taking part in drug trials.
Mohini, aged 12, was diagnosed with acute lymphoblastic leukaemia when she was 9. She decided not to take part in a trial that involved intensive chemotherapy. It was a difficult decision to make. Although Mohini is supportive of clinical trials and research, she says that if she was offered another trial that involved more medicines she may have to say ‘no’. (See ‘Deciding not to take part although eligible to take part in a clinical trial’.)
Mohini aged 12, is Asian Indian, and attends a local school. Her hobbies include dance and volunteering. She is a member of the Medicines for Children's Research Network. Mohini was diagnosed with acute lymphoblastic leukemia at the age of 9.
And because you’ve sort of declined to take part in
a trial for very good reasons and you made the decision, if you were invited to
take part in another trial in the future or something different, would you
reconsider, would you consider another trial?
It depends what
it is, if I mean if it involved more tablets and more medicines I wouldn’t
necessarily I’d probably say no. Because I’ve had so many toxins in my body I
don’t really need anymore. But if it’s something like this with experiences and
views and values then yes I’m there straight away.
So anything that’s missing can be powerful.
I think doctors
have got to understand that when you’ve have cancer there’s just so many
toxins, the only way they can kill cancer is by killing everything else as well
and I think yes I wouldn’t take anymore drugs if I didn’t have to, definitely
Chris, aged 17, took part in a study as a healthy control. The study compared the results of tests and activities completed by healthy children with those of children with attention deficit and hyperactivity disorder (ADHD). (See ‘Other types of medical research’.) The tests ranged from response times using computer packages/games to having body scans. He says that taking part in a study like this can be an enjoyable experience. Although he is prepared to take some risks he is less sure of taking part in drug trials. Chris is aware that although offering money may encourage young people to take part in a trial, they need to think carefully why money is being offered and question who is running the trial.
Christopher is 17 years of age, White British and lives with his parents and elder sister. Christopher is currently studying for his A levels. His hobbies include archery, computing and rifle shooting.
Yes, I would take some risks.
What do you mean by some risks?
I would take something like I would if there was a new scan or whatever that might be used in some new technology or stuff, if I, I’d do that fine. I don’t know about taking any sort of new drugs I think I might leave that but sort of new technology that’s fine.
It’s fine by me yes.
So you have information and then?
And why do you think why do you want to do that, what motivates you to actually want to?
Well all the research and things and you’d have a part in the research and then five years down the line on the news it will come up scientists have made a cure for some certain thing and you think “Well I helped in that”. And sort of I’ve done something then with my life instead of just sitting around doing nothing. And also you get, you get your money, they will pay you money which is great for me, I always need money.
Is that an incentive is it?
Yes that’s an incentive but yes I love the fact that you’re just helping out doing the research because I’m not like going to be a doctor or anything so it’s good to help out.
If the money wasn’t there would you still do it?
If the money wasn’t there...?
Yes I think I’d still do it yes, carry on yes. Because it’s a great, as I say a great experience because you get to do things that only people who are really in a bad situation would be able to do so you get to use these sort of great technical, technological pieces of equipment that have cost millions of pounds or whatever and you’re not ill so. That’s the great bit about it.
Do you think that in terms of trying to encourage younger people to take part in clinical trials and healthy young people as well, do you think that sort of having the payment is a good thing to offer at the start or?
Yes I think payment is of, a lot of young people are looking for payment for things and if it’s free they’re going to be “Oh I don’t want to waste my time doing it” because, especially if it’s new to them and they don’t know what’s going to happen. Then they might need that extra boost to get them going. But once they see what it’s like and yes it’s an enjoyable experience, it’s not a boring or anything.
Yes, it’s just taking part.
Do you think sometimes, because some would say like that the payment is a risk there might be a.......
A not a good incentive? You know, the incentive may be wrong because they may be doing something at risk?
Yes I think you’ve got to have a bit of common sense about what they’re doing on this, It’s like, you know, sort a little ad in the newspaper saying like we’ll pay you £1000 to test our new drug, I think you’ll, woh, stay away from that but sort of, really the money is just sort of just to get you interested with most things and the money makes the world go round these days.
When a new treatment is developed, such as a new cancer drug, it will be tried first in a few people to get an idea of how safe it is. They may be healthy volunteers, who are given a compensation payment for taking part, or they may be people who are ill, perhaps people who have already tried all the usual treatments.
Georgia, aged 10, is taking part in a research study on young people with arthritis. She says it is good that young people take part in research to help other young people in the future. If the trial involved changes to her treatment she would have to ask her parents’ permission and she would like plenty of information; but if the treatment involved having injections then that might put her off.
Georgia is aged 10, is White British, attends a local school and lives with her mum and siblings. She loves dancing, swimming and athletics and is in the school athletics team. She is also a member of Brownies. Georgia was diagnosed with arthritis when she was 18 months.
What sort of trials would you take part in?
Well I’d take part in these ones because I already, I am now.
But I’m not really sure what kind of trials.
If it was changing your treatment like if they wanted to try out a new drug.
Yes I’d probably take part in that but they’d need my parents’ permission.
Yes. What trials perhaps wouldn’t you take part in do you know, what wouldn’t you do?
I’m not sure but if they didn’t give me really much information about it I wouldn’t take part in it. Because I really wouldn’t know what it was about?
So you want to make sure you’ve got lots of information?
And about what the clinical trial is?
We need to get that across don’t we? You want to know that.
So anything that perhaps if it was needles something like that it might put you off?
That would put me off actually, when you think about it, well when I think about it would put me off.
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