Ryan - Interview 47

Age at interview: 12

Age at diagnosis: 8

Brief Outline: Ryan is taking part in a randomised placebo controlled drugs trial. Ryan was happy to take part and help other children in the future, and to help improve his own health.

Background: Ryan is 12 years of age, White British, lives with his parents and brother, and goes to a local school. Ryan was diagnosed with polyarthritis at the age of 8.

More about me...

Ryan is aged 12, lives with his parents and brother and attends a local school. He likes to play football although he now has to be a little more careful due to this arthritis. He was diagnosed with polyarthritis at the age of eight. Ryan is taking part in a randomised placebo controlled drugs trial. The trial is also double-blind which means Ryan and the doctors and health professionals involved in his care do not know what group Ryan is in. He was keen to take part because the medication he was taking, methotrexate, was making him feel quite poorly. He also didn’t like having weekly injections in his legs as they were quite painful and left bruises on his legs.

Ryan received information about the trial and everything was explained to him and his mum. However, at the time he found it all quite overwhelming and there were many words he didn’t understand. The doctors and nurses at the hospital explained things more simply to Ryan to ensure he understood what was involved in the trial and what would happen to him. He felt a little more reassured after this. They didn’t make the decision straight away; Ryan and his mum took the information home and had time to think about it and ensure it was the best thing to do. They did agree to take part and Ryan had to sign an assent form and his mum signed a consent form.

Ryan is pleased to be taking part as he now has a drip to receive the medication and he prefers this to injections. Even though Ryan doesn’t know if he is receiving the trial drug or the placebo he is still happy to take part.

Ryan talks about what is involved and about his experience of being in the trial. He isn’t sure if he would take part in another trial in the future because he wants to see how this trial goes first. He would like to know other young people who are in the trial to share experiences and learn what other young people feel about taking part.

To improve his experience, Ryan says the initial information would be better if it were less wordy and easier to understand. However, he says it is good to take part in the trial to help other children in the future.

 

Ryan says a clinical trial is different to the usual treatment. In a trial the researchers invite...

 

Did they explain that to you?

Not much.

What do you understand about that?

I didn’t understand it, first. I’m not sure about; I know bits of it but not all of the information about.

What do you know about trials? Would you be able to explain it to, if you had to tell one of your friends at school that you were, what, how would you tell them, say, “I’m taking part in a trial and this is what it is”?

A trial is just like, it’s not like the other drug I was on, which loads of people have and like most people start off with. It’s like just very few people are having it and the, and it was just, basically it’s a new drug and they weren’t sure if it worked or not. So I was trying, basically trying it out.
 

Ryan feels that trial information can be overwhelming and difficult to understand. Using bullet...

Yes, I think I was in [the hospital] and then I was having the treatment but it weren’t working properly. So the, my doctor decided to put me on a new drug to try it out. And then he give me all these forms but I didn’t quite know it because there were like all long words in it. So mum kept that and try and read it to me.

 

I wondered if perhaps one of, the doctor or the nurse sat with you and explained things?

 

And that happened as well.

 

And did as well?

 

Yes. Because they just went over it to make sure I understood what was happening, what was going on with it and if I was happy with it happening.

 

And were you?

 

Yes

 

Did you have any questions at that time?

 

No. But once they told me about it I was a bit all right with it because, because, I, I think I was all right with it because it was better than having a needle every week.

 

Do you think there’s a better way of perhaps giving information to you about the trial?

 

Yes, because it wasn’t very easy for me to read, so I didn’t really get much of it. Because it, they were just using big, big long words I couldn’t really understand.

 

And you didn’t like to ask at the time?

 

No.

 

Is that because you, because it was all a bit too much and --

 

Yes, and there was a few doctors I didn’t know there and it just felt a bit weird.

 

Did it? But you, but you think they, if they made it sort of much more --

 

Easy to read, then I would have got it a bit.

 

Perhaps break it down into smaller?

 

Yes, because it was just a big sheet with just all writing on it. Just reading it was making my eyes go a bit.

 

Do you think they should do more pictures and things?

 

Yes.

 

More illustrations perhaps?

 

Yes. Try and break it down a bit.

 

Ryan was too shy to ask the doctors and nurses questions because he didn't know them.

And did you have any questions then, once you’d been home and, did you have, you know, then have, go back and ask them any things?

No, because I was still a bit shy because I didn’t really know anyone. And it was just all quite new to me and that.

Was it a different hospital than one you normally, the one you normally go to?

No, but it’s a different place in the hospital. [Mum' And a different nurse.]


So you didn’t know all of these nurses and doctors? They were all new…

Yes.

…to you? Did that worry you at all? Did that, was that a bit scary?


Yes. Just talking to people I didn’t really know. And it was just a bit weird that they knew a lot about me, and I didn’t know anything about them.

Do you think, do you think you’d like to have known a bit more about them?

Yes.

Yes, I think I would too, yes, especially when they know so much about you.

Yes.

What sort of things do you think, if that was another young person, what do you think they can do to improve that and make it, like giving the young person information about who the doctors are?

Yes. Because I didn’t even know any of their names.

Didn’t you?

No.

Did they introduce themselves to you when --

Yes, it, like it, the second time I went they introduced themselves, but not the first time. So I was a bit shy.

In addition to blood tests Ryan had to be up-to-date with all the childhood vaccinations before...

Ryan' But when I was getting it they kept having to take blood tests to see if I was able to get on the drug.

 

So you had to sort of meet, they call it, it’s like meeting the criteria, don’t they? So what sort of things did you have to do to, before you could go on the trial?

 

Ryan' I had like quite a few blood tests and I had to, they said like if only like one or two joints were swollen, I won’t be able to get on it. But I had like my knees and my feet and my hips and my elbows and that were sore.

 

Mum' He had eleven joints that were swollen, and you had to have more than four.

 

So you had way more then, didn’t you really?

 

Ryan' Yes.

 

Mum' And you had, he had to have had all of his MMR injections and all of his vaccinations up to date to get on it.

 

So there were quite a few things beforehand, weren’t there?

 

Ryan' Yes.

 

And were you pleased that you could take part, when they said, “Yes, you can”?

 

Ryan' Yes, because I thought, I think, I was thinking, “A drip’s better than a needle every week.” Because the needle just made me sick and sometimes I just didn’t want it.

 

Mum' He was also getting very angry at me because I’d learnt to do them so we could do it at home instead of travelling. And he was getting angry at me because I was the one having to give him the needle. So he wasn’t coming home to get it.

 

In the second stage of the trial, Ryan was allocated to a treatment comparison group and neither...

And when they said you could take part, were you quite pleased?

Yes, because I didn’t want to have the needles anymore because it was making me angry at my mum a lot and it was making me a bit sad as well.

Was it?

So then when I had it, it just, it, because they told me it would just be for a wee-, few week, weeks, for a few times until the second period of it. But then I’ve been on to a blind stage which is whether I’m not having it or I am having the actual drug. And that’s where I am now. But it’s a bit better, but I know I don’t know it, but

You feel better? So when, that’s interesting, that they explained to you that you, there were different groups and that you would, so did you have the, they say you would have the drug to start with?

Yes, and then I go on to, which, period two, which is like the blind stage, which I don’t know which. But if I got really, if I get really bad then it’ll just go open and they’ll put me on a drug.

What did you under-, when they said that, do you know what they mean by blind?

I didn’t know at the start, but they told me it was like where they, where I was either having it, I might not be actually having the drug but it weren’t anything that would harm me. It was just I think water or something in it.

And did they mention the word randomisation to you?

Yes.

What did they say about that? Can you remember?

In the blind stage that’s what they basically said; randomised between, between like I get or I don’t. So they’re not sure, they’re not sure themselves. Only the drug company knows.

So the doctors don’t know which one? So that, sometimes they call that double blind, where you don’t know and the doctors don’t know.

Yes.

Does that bother you at all being in, you don’t know?

A bit. Because I, I feel like I want to ask questions about it, but there’s no one knows about it.

So what sort of questions do you want to ask?

Like just what, what does the what does it do basically? How does it work? And how do they make it? And am I actually on the drug at this stage or not?

It’s those things you want to know?

Yes.

Do you think, will there be a point when they will tell you?

I think so. I’m not sure.

They’re questions that you should be asking?

Yes.

Do you think you’ll ask when you go again?

I don’t know, because the doctors there don’t know.

It might just help them to explain it again to you and go through it again? The fact that you didn’t know the doctors very well and that and you took part, did that worry you at all, you know, because you didn’t know them?

Yes.

In what way did that?

It just worries me because, I worry, I’m worried if I start getting really ill and then it just started hurting again.

And then, just tell me what happened there.

The next stage, it was, it was every month. And I’m still on that stage. But we’re not sure if it’s, we think it’s the drug but it, we’re not sure.

What makes you think it might be the drug you, that you’re still on?

Because I’m not getting, basically I’m not flaring up. Like my knees aren’t going up or anything. So it&rsq

Ryan prefers to attend the day ward to receive the trial drug; even though he has to wait for the...

I had to have a joint count on it, no, a joint count and then a blood test. And then we had to wait till the drug was made. Because we had to get, we had to get told to, that we, I was allowed it by the drug company that provided it. And then they made the drug, which took an hour. And then I sat in a chair and then I got a needle in my arm.

 

And that’s what, was that the drip?

 

Yes, drip.

 

And how long, was that like a day appointment?

 

Yes.

 

Just for one day? And how long were you having the drip for?

 

An hour, and then I think there was a 20-minute flush at the end.

 

What does that mean?

 

A flush. Where they just put water in it, so the rest of the drug goes through. Because sometimes there’d be like a little bit left. But there’s this ball that stopped it when it got too low. So if they put water in it, it’ll, the ball will go back up and put the rest of the drug through on the drip.

 

So that’s all on the drip? And that’s, do you have to go in to a little room to have that?

 

No, it’s like, because there was quite a few people having it. But not all the people had the same thing.

 

So you just had to sit in a chair?

 

Mum' You have a nice chair, don’t you?

 

Yes.

 

But were there other children your age? You know, were you able to talk with all them?

 

Yes.

 

But they weren’t all having the same thing?

 

No.

 

And what happened after the, when they’d done the drip and they’d flushed it, what happened then?

 

I had to wait like a few minutes and then I’d be allowed to go. But they had to take the drip thing out.

 

And did you mind do, going in and having the drip done? You know, was it better than –

 

Yes, it was better than having the needle at home. Because sometimes I, I try and walk home dead slowly and try and put off coming home.

 

Did you? Because you didn’t want to have the needles?

 

No.

 

And is that because they were painful?

 

Yes. And I felt dizzy and sick.

 

Did you? Was that from having the needle? Or was that the drug that made you feel…

 

From having the needle.

 

From having the needle? It really made you quite anxious?

 

Yes.

 

You’re not alone in that. It’s, it’s never nice, having needles, is it? If you’ve got to have them every day. So you didn’t really like coming home then?

 

No. And I started getting angry at my mum because she was the one that was giving me it.

 

Did it make you feel better when you, after you’d been angry?

 

Yes.

 

So how did it, when, once you’d had it done, were you okay? Was it just the thought of having it done?

 

I was a bit feeling sick after it.

 

Were you? And the, but the drip, although it’s still a

Ryan feels that trial information can be overwhelming and difficult to understand. Using bullet...

Do you think there’s a better way of perhaps giving information to you about the trial?

 

Yes, because it wasn’t very easy for me to read, so I didn’t really get much of it. Because it, they were just using big, big long words I couldn’t really understand.

 

And you didn’t like to ask at the time?

 

No.

 

Is that because you, because it was all a bit too much and –

 

Yes and there was a few doctors I didn’t know there and it just felt a bit weird.

 

Did it? But you, but you think they, if they made it sort of much more –

 

Easy to read, then I would have got it a bit. Yes, because it was just a big sheet with just all writing on it. Just reading it was making my eyes go a bit.

 

Do you think they should do more pictures and things?

 

Yes.

 

More illustrations perhaps?

 

Yes. Try and break it down a bit.

 

And did you have any questions then, once you’d been home and, did you have, you know, then have, go back and ask them any things?

 

No, because I was still a bit shy because I didn’t really know anyone. And it was just all quite new to me and that.

 

Was it a different hospital than one you normally, the one you normally go to?

 

No, but it’s a different place in the hospital. [Mum' And a different nurse.]

 

Did that worry you at all?

 

Yes. Just talking to people I didn’t really know. And it was just a bit weird that they knew a lot about me, and I didn’t know anything about them.

 

Do you think, do you think you’d like to have known a bit more about them?

 

Yes.

 

Yes, I think I would too, yes, especially when they know so much about you.

 

Yes.

 

What sort of things do you think, if, if that was another young person, what do you think they can do to improve that and make it, like giving the young person information about who the doctors are?

 

Yes. Because I didn’t even know any of their names.

 

Didn’t you?

 

No.

 

Did they introduce themselves to you when –

 

Yes, it, like it, the second time I went they introduced themselves, but not the first time. So I was a bit shy.

 

Sharing experiences of being in a trial Ryan feels may help to reassure other young people who...

Do you think like it, would it be nice, do you think, like you mentioned not knowing anybody, to sort of know other children?

Yes, it would be nice to know other children and be able to talk to them how they feel. And it would just be nice to like, even if there’s someone new going on it, just to talk to them and tell, like when I was a bit scared going on it, tell them that it’s all right and that.