Clinical trials & medical research (young people)

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.

 

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.

 

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?”

 

 

Yes.

 

 

But they’re, they’re nice though. They’re nice.

 

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.

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].

 

Yes. And then they give me the all-clear to take the drug or not.

 

Yes. Yes, that’s why it has to be on certain days, because it has to be couriered and etcetera.

 

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.

 

 

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.

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?

 

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.

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.

Yes, they’re doing one block now.

 

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.

 

Yes.

 

 

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.

 

Exactly.

 

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.

 

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.

 

I read the papers myself.

 

I didn’t always understand them fully but I read them myself and just asked if there was something that I didn’t understand.

 

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.

 

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.

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 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.

 

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.

 

 

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.

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.

 

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.