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Clinical trials & medical research (young people)

Getting feedback and the end of a trial

Sometimes trials involve a one-off or fairly short commitment from young people. For these people the end of their involvement was not much of an issue. How people feel at the end of trials may depend on the kind of relationship there has been between the research team and the patient. All the young people we talked to had a good relationship with the research team and were pleased they agreed to take part. Young people we interviewed talked about the importance of receiving feedback about the trial. This included both information about their own health and how they personally had responded to the treatment, and feedback of the overall trial results. Some young people we talked to said how much they had learnt about their condition and hoped other young people would agree to take part in research in the future. 
 

Sophie has had feedback about her personal results and has been promised a summary of what the...

Sophie has had feedback about her personal results and has been promised a summary of what the...

Age at interview: 23
Sex: Female
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And it was very interesting because my doctor has sent me an email to say that she’s done my trace. So based on the censor that was continually taking my blood the sugar level and based on the finger pricks they’ve managed to trace, do a trace of my, what my blood sugar level was over the period of four days and she said that it’s normal so that’s good to know. And when I go to my next clinic appointment she will actually show me the trace and talk me through it and then when she’s put all the research together she’s going to obviously do a research paper on it and she’ll do a summary for all the patients that have taken part for us to read and for us to understand.

Yeah, that’s good.

So I think there’s lots of benefits of taking part in this research, and it’s definitely something that I’ll consider doing in the future.
 

 

Taking part in the trial was a ‘wake-up’ call for Hannah, and a realisation of how little she...

Taking part in the trial was a ‘wake-up’ call for Hannah, and a realisation of how little she...

Age at interview: 17
Sex: Female
Age at diagnosis: 4
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So it helped you personally?
 
It kind of gave me a wake-up call on how I need to sort some things out, like I need to be, need to do a lot more blood sugars and s-, things like that. It does make you realise.
 
I mean it would be nice for you to talk more about that, how it did help you?
 
It helped me because it sort of, you can put your finger on what exactly you feel like is going wrong with your diabetes or, or how you think you could improve how you treat your diabetes. And also it makes me realise how little I feel like I knew about it. If someone asked me, “What exactly is diabetes?” I probably wouldn’t be able to tell them exactly, but I’ve got a rough idea.
 
So that, has that helped you sort of clarify lots of things in your own mind?
 
Yes, because I have been asking the doctors a lot more questions about, “Why do I need to do that?” or “Why do I need to do this?” Just so that I know, rather than my parents.
 
And has that been through, because of completing the survey?
 
I would say that had a, a little impact, yes. It made me feel like, “Yes, I need to do something about it.”
 
So it made you more inquisitive? 
 
Yes.
 
So you understand you, how it affects you?
 
Yes.
 
Because I think one of the people I spoke to as well said that it, they hadn’t realised that it can affect people in different ways.
 
Yes.
 
And is that how you, did you understand that before or is that something you’ve recently…?
 
What, diabetes in different ways?
 
Yes.
 
Yes.
 
Because obviously I can see it from two different ways, because my cousins have got it as well. So they get affected by different things, whereas I maybe don’t, because they’re smaller than me and I’ve got a bigger build. So maybe just different insulin affects people, and different activities.

 

Most of the time young people said they received some personal feedback but sometimes they felt they had to ask. Lauren is taking part in a trial on the side effects – wanted and unwanted – of insulin used when a low carbohydrate diet is followed in treating diabetes.
 

Lauren likes to know of changes in her height and weight, and sometimes has to remind the nurses...

Lauren likes to know of changes in her height and weight, and sometimes has to remind the nurses...

Age at interview: 16
Sex: Female
Age at diagnosis: 13
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I normally ask them that. I’ve grown quite a bit and I’ve put on weight, but I’ve lost inches around my waist. So I’m not sure how this is working out. But apparently I have.
 
You’re going to change shape?
 
Yes, I’m just going to turn into a different me. But I’m not, I don’t worry about weight. That’s not a big problem for me. I just, it’s not a concern. But I really like to grow. So when they tell me I’ve grown I feel quite happy. I don’t care about anything else. So I like the idea of growing.
 
So they do tell you that you’ve grown?
 
Yes, yes, they get, they do tell you. Sometimes you have to ask, especially the nurses who aren’t with the trial. You have to, because sometimes they can be moody, so you’re just like, “So what’s the height?” And then they’re like, “Oh, well” and you’re like, “I’ll just look at my sheet, shall I?”
 
So they’re a bit moody sometimes --
 
Yes.
 
-- when they’re busy?
 
But they’re, they’re nice though. They’re nice.
 
I’m just wondering how they work that out from what’s normal growth and then what’s part of the trial.
 
They, yes, I don’t know how that, that work actually. Because the nurse takes all my things that they need for normal check-up. And I have to have my blood pressure taken again and I have to have like my waist measured as well. But I don’t know about the growth actually. But that doesn’t, that does, that does confuse me, because we’re kind of like a growing generation. So I am going to bring that up. I’ll bring that up next time.

 

 

Even though his health is closely monitored, Alexander sometimes feels that personal feedback is...

Even though his health is closely monitored, Alexander sometimes feels that personal feedback is...

Age at interview: 18
Sex: Male
Age at diagnosis: 16
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And the results of the trial. Have they talked about that at all?
 
Not really. They haven’t really shared much of that information with me. The only people who seem to really know what’s going on is the drugs trial company and the doctors. But they don’t really seem to share that much information. I say the doctors, they seem to know what they are do-, doing. They obviously know what they’re doing. But they don’t have all the information. As well, they have to send a lot of it off to this company in [country].
 
So it all goes there?
 
Yes. And then they give me the all-clear to take the drug or not.
 
So you have to wait for that as well?
 
Yes. Yes, that’s why it has to be on certain days, because it has to be couriered and etcetera.
 
And, but in terms of personal results, do you get any of those back at all, about how you’re doing?
 
Except for my height, weight and urine sample, that’s pretty much it. They don’t really tell you what else is going on. I wouldn’t mind to know what’s going on, but it’s quite hush-hush sometimes. But sometimes they do try, but it just doesn’t make sense.
 
And would you like to know the results of the trial overall?
 
It would be quite nice to know, just to kind of show, “Yes, you’ve been doing this, you’ve been doing this. Your levels have been going up and down, up and down.” Because in the place in area they thought I had another thing, and they would tell me the results. They would tell me if something’s up or if it’s down or… But it seems to be very quiet.

 

Some young people we talked to, who are taking part in randomised placebo controlled (blinded) trials, said they would like to know which drug they had been taking and how it had affected their health. (For an explanation of the different types of trials please go to ‘Different types of trials’; ‘Why do we have clinical trials in children and young people’ and ‘Understanding allocation (randomisation) to a treatment comparison group’.
 

Joanna is near the end of a trial and is curious to know which drug she is taking and what effect...

Joanna is near the end of a trial and is curious to know which drug she is taking and what effect...

Age at interview: 17
Sex: Female
Age at diagnosis: 16
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Would you like to know at the end about the results of the trial?
 
Yes, I would be quite interested in it, to be honest with you. I would, I, because I think it would be quite interesting to know, if, if I wasn’t on the actual medication, whether the steroid has made my bones more brittle without it, or if I was on it, if they’d got stronger from it.
 
Does that worry you at all? Because the idea was to help prevent your bones from going brittle so if you have been on the placebo and maybe they haven’t strengthened or whatever the results are, do you think about that at all?
 
No, not really, because I don’t think there’s anything I can do about it if the, it has happened. Because I think the other drug is for people who’ve only just started the steroid, so it doesn’t happen to them. But, seeing as I’ve had it, I don’t think there anything is, I can do for it.
 
What are you hoping you’re on?
 
I’m not sure.
 
Do you have any sneaky feelings of what you might be on?
 
Yes, I think I’m on the placebo one, yes.
 
What, what makes you feel that?
 
I don’t know. Just that you would think that some medication would have side effects. But I didn’t get any off this. So that’s kind of a bit of a hint.

 

For many young people, long term follow-up will be a part of on-going treatment, but this may not be as intensive, or involve such close monitoring. Of course this can apply equally to the ending of any long term period of care, whether it is within trials or not. This might be a relief, but sometimes young people could also miss the close contact with staff when they were part of a trial.
 

It was a relief at the end of the trial and the treatment, but Eden was pleased she had taken...

It was a relief at the end of the trial and the treatment, but Eden was pleased she had taken...

Age at interview: 17
Sex: Female
Age at diagnosis: 16
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So after the, when it all ended the trial, the treatment and everything did they tell you the results and everything then?
 
Eden' Yes I went back I had to get like x-rays on my heart and my kidneys and the consultant looked at it and he said that it had gone but it hadn’t fully gone I was just in remission. Then I have to go back every three months to have chest x-rays.
 
Do you still do that?
 
Eden' Yes I went; my last one was the 8th August that was my first one since I got the all clear.
 
You’ve got the all clear?
 
Eden' Yes.
 
Oh brilliant, so is that good, you’re pleased now?
 
Eden' Yes.
 
Yes and how long will, do you still have to go back?
 
Eden' Yes every three months isn’t it?
 
Yes you still go back to keep an eye on you yes. Were you, you say you were pleased to take part in the end?
 
Eden' Yes.
 
It’s all worked out okay, did it, how did it feel when the trial ended; you know you wasn’t taking part or the treatment had ended?
 
Eden' Relief.
 
Was it? Just pleased to try and get back to some normality?
 
Eden' Yes, didn’t have to go to hospital every day. I get on and I could go away on holiday.
 
And did you?
 
Eden' Yes.
 
Where did you go?
 
Eden' My uncle lives in Spain so I went to his.
 
Oh fantastic, yes. A well deserved break I think.
 
Mum' I think when it ends though you’re lost. Because you’ve got all these professionals and all this advice all around you and people there and then it all ends.
 
Yes that’s what I’m just wondering how it felt.
 
Mum' Your life pattern is just, I had to leave work for six months her dad had to move back in to look after her as well because it was becoming too hard for me throughout it, through her illness. Everything changes and then you’re just meant to go back to normal and it’s very hard going from sort of being closeted and nurtured by these people and they don’t turn their backs but it’s all just gone, it’s so intense, you’re life revolves around it, your times, everything has to stop. Your holidays, people coming to the house, we couldn’t have people at the house there was always fear of infection.

Did you miss, you know not miss that’s the wrong word but you know, not having that you know intensity and somebody to call? Were you still able to call on them?
 
Eden' Yes.
 
Yes, so it wasn’t like they’d completely?
 
Eden' No because when I finished my treatment to start I had my line in for a bit and I used to phone in because it used to get dead itchy so I used to pani
Several young people we spoke to were hoping that when the trial ended they could continue with the trial drug. Others had stopped the trial drug and were now taking their usual, or other, medication. In contrast, Lauren is hoping to go back to her original background insulin.
 

At the end of the trial Alexander thinks he will be taken off the trial drug, but if his health...

At the end of the trial Alexander thinks he will be taken off the trial drug, but if his health...

Age at interview: 18
Sex: Male
Age at diagnosis: 16
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Do you know what will happen at, at the end of the trial?

At the end of the trial, I think I’m coming off it for a while. If it works, if I start deteriorating from the drug, it means they’ll try and get me back on to the drug. I know if I come off it they won’t be able to bring me back in to it because they’ll be kind of arguing the point. But if the drug still doesn’t get licensed, the NHS can get me on to it. My doctors have to appeal to the NHS Trust, to say, “This drug works fantastically for this patient. Can we keep him on it?” And they’ll pay for it. So that’s an ongoing thing again.
 

 

Kay is hoping that if the trial drug proves to be of benefit, then she will be able to continue...

Kay is hoping that if the trial drug proves to be of benefit, then she will be able to continue...

Age at interview: 23
Sex: Female
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But you’ve still got the opportunity of going on to the Mannitol; you having you’re not going to be completely left with, going back onto old medication?
 
No the doctor said that if I like the Mannitol he’ll fight my corner to get it so the NHS will pay up for it so, he’s, the good thing about my CF (Cystic fibrosis) Team is that they’re really kind of patient focused and they, they’ll do anything they can for their patients so.
 
So it’s not a given, he’s still got to ask for it?
 
It’s if I want, they’ve said “If you think it’s that valuable then you can have it”. Because I think you know the NHS has changed now, it’s not the doctor just prescribing; it’s kind of patient/clinician making decisions together so. I think if I ask for it he’ll fight for my corner for it which is, which is nice.

 

 

At the end of the trial Stephanie is adapting to a different medication, but she doesn’t mind...

At the end of the trial Stephanie is adapting to a different medication, but she doesn’t mind...

Age at interview: 18
Sex: Female
Age at diagnosis: 15
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I mean how did you feel when it ended? What happened then?
 
I went on to, when the trial ended I went on to a different drug that was, I’m not really sure what it was for actually. But a lot of, like it’s, it’s kind of back to what most people take and kind of just adapting to that new drug and the side effects that that had.
 
Did that bother you that, because you were doing so well and then you’ve gone back to what the standard treatment is? How did you, you know, how did that…?
 
It didn’t, I didn’t really feel any different about it. Just, the trial was over and it just meant that if I ran out of pills that I didn’t have to go all the way to [area] just to get a prescription kind of thing. It was; that was easier. I could just go to my local pharmacy and just get them.
 
Has it ha-, has it made much difference to you? Because you said you were adapting to sort of the side effects of the…
 
No, because the side effects of the new drug, azathioprine, are just a lot less. Like I can go out in the sun, I can go on holiday and, and kind of be a bit less careful, but still careful. And by the time I was on the azathioprine my steroid dose has come, had come really far down as well. So the whole thing had kind of tapered off. So, you know, it was, everything was a bit more manageable. And, you know now I’m not on any steroids, and they are the only pills I take.
 
Do you still take the iron and the calcium?
 
I, the iron used to make me really really sick. So I don’t take that any more. I take calcium like once every three weeks.

 

 

Knowing the trial will help to guide further research into background insulin makes taking part...

Knowing the trial will help to guide further research into background insulin makes taking part...

Age at interview: 16
Sex: Female
Age at diagnosis: 13
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And in terms of, have they said anything about when the trial ends what will happen?
 
I think they’ll look at everybody’s results and they’ll give me like my results and a summary of what the trial, and they’ll go into more, further research into, from what they’ve got from everybody’s kind of results and that’ll go on from there sort of thing. So it’ll be an ongoing thing for a, maybe another year or something. But I’m hoping I can go back to Levemir, because it was nicer. But mum says, “I think you’ll be stuck with Lantus.” So I’m not looking forward to it, to be honest. But I think in, if I get used to it hopefully my background insulin will go down. It does in hot countries. I can take 20 and it’s like, “Yes.” So I’m looking forward to moving to a hot country. If I do, if I do have to stick with Lantus I’m moving to Turkey for the rest of my life.

 

Many young people we talked to were unsure what would happen at the end of the trial, and for some the end of the trial seemed a long way off, and a few young people were unsure if the trial had ended. 
 

It would have been helpful if the researchers had told Ethan whether the trial had ended. He was...

It would have been helpful if the researchers had told Ethan whether the trial had ended. He was...

Age at interview: 12
Sex: Male
Age at diagnosis: 11
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And did they, they didn’t mention anything about this is the end of the trial or not?
 
Not really no.
 
Did you think it’s important that you do know?
 
Yes.
 
What would you...
 
I think they should, they should have told me that it was the end of it because like because I wanted to know if I had to go back or anything and like stuff like that like if I had to go back but yes. I just, I just think they should have told me before I left but obviously not.
 
I mean if they could improve, you know, taking on your experience in to account that you say that at the time you more importantly wanted to get better. But if they could improve a clinical trial, for like yourself taking part, how could they improve that? If you had a message to say to them?
 
I think that they could have told me that it was finished like if I needed any improvement or anything. Wait I think they did tell me that I needed improvement I’m not quite sure, yes I think, no I don’t think they did. But Iike yes they need to tell you when like if you’re done, they need to tell you like I can’t really think I’ve got it in my mind .
 
Take your time.
 
They could tell you that that like, yes that’s it really I think they did everything else like what they told me, what I think they really need to do is tell you like that you’ve finished and that.

 

Several young people we interviewed remembered that they had been promised by the research team that they would be sent news of what the trial had found. Others were unsure if they were going to receive any feedback of the trial results, or couldn’t remember if it was mentioned in the initial information they were given. Some young people wanted to know if other young people taking part had improved health. 
 
Jenna doesn’t know if she will get any feedback of the trial results but says she would like to' “Yes, because ….my mum just said that I was a different type of arthritis. So it could have like had different effects on me and then like different effects on other people with different types of arthritis. So it would be quite interesting to find out.”
 

Knowing how other people had done in the trial would be interesting to Stephanie, but she feels...

Knowing how other people had done in the trial would be interesting to Stephanie, but she feels...

Age at interview: 18
Sex: Female
Age at diagnosis: 15
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You didn’t receive anything?
 
I didn’t expect to though because, I don’t know, I know that a lot of things are quite secretive. I, you know, I learnt all about it. I did psychology as, as an A level. So a lot of, I know a lot of studies are kind of, you participate and then that’s about it. That’s all they want from you. They’re not going to share the information with you.
 
I just wondered if they, I mean would you like to know at all. Do you think it’s important?
 
I’d like to, I think, I’d be interested if other people kind of turned out the same as me and did well, and if they didn’t do well, kind of what went wrong. Just because I’m nosey. I just think I’m interested in kind of what happened to other people that are the same as me. But apart from that, I’m not that bothered by not knowing. I think that my case in itself is a success. So whether everyone else did well or not is, you know, it’s sad if they didn’t. But I, I contributed to the cause and I did very well. So that’s all I can say really.

 

Ruby was diagnosed with Lupus when she was 16 and takes steroids as part of her regular treatment. She is taking part in a randomised trial to see if a medicine helps to prevent thinning of the bones when taking steroids. 
 

Although Ruby receives some personal feedback at each hospital appointment, she is unsure if she...

Although Ruby receives some personal feedback at each hospital appointment, she is unsure if she...

Age at interview: 17
Sex: Female
Age at diagnosis: 16
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What would you, what are you hoping might happen at the end?
 
Something good. That my bones haven’t been thinned that much.
 
And have they said when you might get any results at all?
 
Not really. ( No?) I don’t think so. Maybe at the end of the year.
 
Do you think it’s important to have those?
 
Yes, it’s important to have results. Otherwise you’re just taking it and not knowing what’s going on.
 
Would you like to have some results?
 
Yes, yes. I’ll probably ask about that next time.

 

However, other young people we talked to said that getting feedback of the trial results wasn’t that important to them. For example Saskia said, ‘’I don’t mind really. I’ve not had any results…I don’t know really. It depends what the results were’. But they hoped that the results would help improve the treatment for other people with similar conditions in the future. 
 
Current guidance is that, at the end of a trial, the results are made available to everyone who took part, if they want them. They should also be published so that the wider community can use them to guide decisions about treatment and care. Of course, in many cases it can take time, sometimes years, before the results of trials are published, because the findings have to be carefully analysed. Trials themselves may take years to complete. Young people recognised this, but still felt they would like to know. Some of those with an interest in science and maths felt strongly that researchers should not assume young people (or their parents) would find it too hard to understand.
 

Sophie knew exactly when and how the results of the research she took part in will be published,...

Sophie knew exactly when and how the results of the research she took part in will be published,...

Age at interview: 23
Sex: Female
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My doctor from when I took part in my research she said for feedback, although we can give you your personal results at your next clinic visit, the final results from everyone will not be available until 2010. So that’s, that’s letting us know before we take part in the study that they are not going to be available until 2010. And it said that we will send out a letter to everyone who took part and write it in [name of bulletin] which is a hospital bulletin. So that’s telling you that the results, although they are all going to be anonymous, they are going to be sent out, and it says here, “We plan to publish our research at conferences and in medical journals so that others CF teams can learn from our findings”. So that's telling me that it’s going to be published and that the, that it’s going to send a letter to everyone that took part. However, if I wanted to find out what’s been taken part in other clinical trials and the results of other clinical trials it’s very difficult like, I actually you know I’ve done a degree in psychology and that involved a lot of research. But at the time, I obviously had my own password and I had access to journals, but now I’m not a student any more I don’t have, I don’t have an ‘Athens’ password, a user name and password that would give me access to find results of studies that have recently taken place. So, as a patient you may have taken part in a study, but you can’t actually access the published journal which just seems crazy when you think about it?
 
Or even know what’s going on or access any results you know.
 
Medical literature, because the majority, there is obviously lots of websites with information. But I was searching for something a few weeks ago. I was having a problem with my health and I wanted to research it a bit further and when I came to want to research it, all the official published journals about what I was going through I couldn’t access. I could go on websites and read about it but actual scientific research which had taken part into the particular problem that I was having at the time I couldn’t actually access it. Which is just as a patient you want to have access to that and you want to read what’s been going on and the results of studies looking at whatever you might be dealing with at the time. But I couldn’t get access to that.
 
That’s interesting.
 
So, that’s there needs to be maybe a patient database where you can access, you know, papers and journals that are relevant to you.
 
Yeah. I think there may be some available. I haven’t looked recently but, there’s a wealth of information out there, but the actual journals and medical journals are all, you have to have a special password to get to them so you can’t actually read them as a patient.

 

 

Mohini is pleased to know that the results of the trial are now published and a leukaemia...

Mohini is pleased to know that the results of the trial are now published and a leukaemia...

Age at interview: 12
Sex: Female
Age at diagnosis: 9
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Do you know the result of the?
 
Yes, they’re doing one block now.
 
They’re doing one block?
 
They’re doing one block now because, I was quite, to be honest I was surprised that they actually did the trial because they, this is what they do in Europe and America already, that way Europe is quite ahead in research when it comes to cancer. So now they’ve changed to one block across the country not the country, region or whatever. You get what I mean.
 
That’s interesting really isn’t it?
 
Yes.
 
So in an end...
 
But I suppose they had to prove it otherwise they would be like; they would have no reason to change the trial because from different nationalities react differently to drugs. Different ethnic backgrounds, your DNA is very different.
 
Yes and age.
 
Exactly.
 
So just, did that reassure you when you heard that, when you found that out just doing the one block?
 
I mean for patients now it’s very good because at the end of the day it’s less suffering. It’s less chemo and its less toxins and it’s less suffering. So yes I mean that’s a lot better. Because my dad actually did a lot of research before we made our decision he used to go on like Pub Med and all the medical journals and read and stuff to find out.
 
Right, was that a good thing?
 
Yes I think we got a lot of background information on what they’re doing in different countries and why they do it that really did help in making a decision, definitely.
 
That helped you; did that help your dad explain things to you?
 
I read the papers myself.
 
Did you?
 
I didn’t always understand them fully but I read them myself and just asked if there was something that I didn’t understand.
 
So that’s quite a big thing to do isn’t it?
 
And like now I can read all these papers and understand most of it. Like the other day me and my mum were doing some research on Pub Med and I was reading these like four pages long trial reports or something and yes I understand that.
 
Oh so it’s kind of informed you?
 
Yes definitely, I know a lot of stuff that I think a lot of kids my age wouldn’t dare touch or understand in any way.

 

 

Although researchers do try to keep you informed, it is a good idea to take an interest in what...

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Did you have any results from all of these studies that you have?

I think I could have had, I think I could have had them if I asked for them I think with most of them sort of they wait until they’ve finished with it and it’s written up in a paper. But they always, they always try and make sure you’re as informed as possible and that you can, not exactly get involved but you can learn as much about what you’re doing as possible. And as I said because I did science A Levels and a maths degree I do take an interest in what they’re doing.
 
So you’re more likely to ask?
 
Yes, yes I mean I, for the, for the run in study I did up to this multi dose one, I had to go down to [area] overnight for a, some mucosal clearance scan and it was really cool. They got me to breath in radioactive isotope, where it, it was quite safe. It had a short half life but they then sort of took three, they sort of took an x-ray like that then basically take an x-ray like that and then, and then doing all of them all the way round they then built a 3D model of my lungs on the screen based on where these radioactive isotopes where, all the different angles and I mean it was just incredible to see it on the screen. And I mentioned I was doing a maths degree so they got the guy who designed the programme to come and have a chat with me and I got to learn about how the program was taking the data from the x-rays to build this model of my lungs.

 

 

Kay would like to know the results of the trial, but it may take a while to hear. Trials may show...

Kay would like to know the results of the trial, but it may take a while to hear. Trials may show...

Age at interview: 23
Sex: Female
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And what will happen at the end?
 
At the end I assume, they usually provide some kind of information on how the results have affected everyone else or how, how the medication has affected everyone else in the study. So that probably won’t be available for a while. But, I assume eventually they’ll provide some kind of feedback and go from there.
 
I mean in both those other trials, the Mannitol and Heparin, have they said when you might get the results and when the study completes, when it finishes?
 
I think the Mannitol has actually finished and they have provided some kind of verbal feedback. But I think there’s, they’re waiting, they wanted the Mannitol to become kind of okay for the NHS to prescribe, I think they’ve got quite a lot of people and things to do. But I think that’s going to be available via the NHS eventually for people with respiratory problems. But no I think if I ask for the information it would be readily available. I’m not sure about the Heparin because it’s at such an early stage I think.
 
I just wondered whether it was in the information that they actually gave you a time scale and whether they’d give you any of the results at some point when the study ends?
 
They do, they do say that they can provide kind of facts and figures at the end but if, I suppose if you ask for it really.
 
Yeah. Do you think that’s important to know?
 
I think it is, but on a really selfish level as long as I’ve reacted quite well to it then I’m quite happy. And I think, I think with all the new CF drugs coming through all, any kind of new drugs coming through at the moment and it’s all about tailoring the, tailoring the drugs to the certain individual. So, as long as it’s beneficial for one person, okay it might not be beneficial for another twenty, for the other twenty people, but if it’s beneficial for that one person then I think it’s a good thing. So I suppose it is interesting to know if it’s beneficial for a wider range of people but if it’s, if it’s helpful for a minority then it’s still, it’s still a good thing because everyone, you know, some people can have a headache and paracetamol won’t touch it but you know paracetamol can be helpful for other people so . I think its trial and error with medicine as well.

 

 

Knowing he has taken part in trials that help others with cystic fibrosis is satisfying for...

Knowing he has taken part in trials that help others with cystic fibrosis is satisfying for...

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Yes, well I guess one thing I might have liked, I don’t know how practical this is, is that so I said with the nose dripping one, I then saw the doctor and he said “Oh yes we got good results”. But that was so long after actually doing the trial I’d sort of almost forgotten about it. So I mean whether you might have to sign a confidentiality thing I don’t know but whether you could just be told thank you for taking part in the trial it seems we’ve actually found something. Because, because the publications process in academia is a long and drawn out that by the time we get to see anything that’s happened it’s always been such a big delay afterwards. And as I say you almost sort of forget what you’ve done. So it might be nice to know that your contribution has been worthwhile and maybe has found something interesting a bit closer to when you do it yes.
 
I think that’s important and a lot of people have said that, to have those results in a way so that you know, yes it was worthwhile, and just because you want to know.
 
Yes, yes and because, you know, when you’re doing something to, that you’re hoping has a benefit and find something useful then it is it’s always satisfying to know that it has worked.

 



Last reviewed March 2017.
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