Joanna - Interview 53

Age at interview: 17

Age at diagnosis: 16

Brief Outline: Joanna was admitted to hospital because of stomach pains and aches. She was diagnosed with vasculitis and soon after diagnosis was invited to take part in a randomised placebo controlled trial to which she agreed.

Background: Joanna is 17 years of age, White British and lives with her parents. She is currently at college studying musical theatre. Joanna was diagnosed with vasculitis when she was16.

More about me...

Joanna is 17 years of age, White British and lives with her parents. She is currently at college studying musical theatre. Recently she was admitted to hospital with stomach pains, joint pains and aches and was diagnosed with vasculitis. A month later, Joanna recalls a research nurse asking if she would take part in a clinical trial. At the time Joanna felt a bit overwhelmed with having information about the trial. However, she didn’t have to make the decision straight away and although she did discuss it with her mum at the time, she left the decision with her. They explained she could stop at any time without affecting her care.

Joanna explains that she has to take steroids, prednisolone, and some of the side effects are brittle bones and muscle weakness. She may also experience a ‘silent fracture’, which means she can fracture her bones and not know about it. The purpose of the trial is to help people in the future who may have to take steroids to see if the new medication, or trial drug, helps to strengthen bones. She remembers receiving lots of booklets and information though cannot remember what it said.

One of the reasons for taking part was to help other people because vasculitis is rare among young people. Joanna and her mum also knew that the doctors would closely monitor her and this was reassuring for them both at the time.

Joanna had to take her usual medication and the trial medicine. However she says it was quite complicated because one of the medicines she had to take weekly and sometimes she forgot. This sometimes worried her incase it meant her information could not be used in the trial. However, she told the nurses and they reassured her that it was okay though to try and take it as prescribed.

Joanna doesn’t know if she taking the trial drug or the placebo, however she is happy to take part. She says that taking part will help other people in the future. She would like to know the results of the trial and would also like some personal feedback.

Joanna says that if you take part in a clinical trial you have to be committed to do it and organised if it involves taking regular medicines at different times of the week. She is supportive of clinical trials in general.
 

The trial will compare calcium with the trial drugs to see which one works. Joanna is hoping that...

So what medication were you on before then, before the trial? You had the chemotherapy, but were you on, taking anything then?

 

Yes, I was, I’m still on now prednisolone, which is what they’re doing the trial for. Because it causes, because that’s the steroid and it causes brittle bones.

 

So you still take that?

 

Yes. I’m coming down off that now though.

 

And did they, do you understand what the purpose of the trial is, what they’re aiming to do?

 

Yes, to, like I said before, to like see if what I’m taking helps make my bones stronger. Or if it’s the calcium, because I get a tablet and I have to take calcium every night.

I was going to say, what, what is it? What does the trial involve for you? What do you have to do?

 

Yes, I have to take a tablet once a week and then calcium every night. Which is quite, it’s harder to remember taking it once a week instead of every day, because that’s just routine. But once a week is quite difficult to remember. And then the calcium to take every night. Because it’s not very nice to take them if you haven’t got juice in the house or something. It doesn’t taste nice.

 

Does it come as a liquid then?

 

No, it’s in a sachet and you’ve got to put it and mix it in your drink. And it’s not very nice to take either.

 

Isn’t it?

 

No.

 

Do you have to take it with some juice?

 

Yes.

 

Like take it with that?

 

Yes.

 

And that’s every day?

 

Yes.

 

Is that just once a day?

 

Yes, once a day.

 

And then, so you take that and then you have to take, what’s the, what do you have to take weekly?

 

It’s just, I was on a place-, I can’t say the word. The, you don’t know what it is. Because it could either be a false one or a real, real one, because they’re just trying to see, they’re try-, whether the calcium works best or the actual tablet works.

 

So were you randomised into –

 

Yes, groups, yes.

 

So tell me about that then, how that, how that goes about. What does that mean?

 

Some people have got the actual drug and some people have got the blank, what is it?

 

The placebo.

 

Yes, the pl-, yes. And you don’t know which one you’ve got. And you, we’ve all got to have the calcium as well. And whoever’s got the real drug, it’ll show whether that’s worked, compared to the people who’ve just been taking the calcium. And they compare it to see which is best, the calcium or the actual drug.

 

Joanna was in hospital when she was given information about a trial. It was a lot to take in at...

So when did you get invited to take part in the clinical trial?

 

I think it was about a month or two after I’d been in hospital for my chemo. And they came, actually, no, sorry, I had to go in August for three days to get my first dose, and they came in and asked if I wanted to be part of the trial.

 

And how did it feel at that time? Did you understand what was happening when they asked you? And, because you’d not long been diagnosed and you were just having treatment, and then you’re asked to take part in something. I mean how did that sort of feel?

 

A bit overwhelmed, but like my mum suggested that would probably be best for me because they kept an eye on me, on my bones. Because they told me that I could have silent fractures and that. So I get regular bone scans of, and that.

 

What does a silent fracture mean?

 

I could fracture one of my bones and not know about it.

 

Would it not hurt?

 

No, it’s not meant to hurt. It’s just meant to happen and you’re not meant to know about it. It’s quite weird.

 

Have you ever had that?

 

No. I just keep on having my scans now and then, and it seems fine.

 

So when you were invited, were you in hospital at that time…

 

Yes.

 

…receiving some chemotherapy…

 

Yes.

 

…treatment already? So how long had you been in hospital?

 

I think they might have come in on either the second or the third day I was there.

 

Was it a nurse or consultant that asked you?

 

It was a nurse, I think. She was, she, I think she was involved in all the trial and that.

 

And how did they sort of, how did they invite you? When I say that, is,did they asked you and you said yes? Did they give you some information, explain things to you?

Yes, they explained about how it’s going to help in the future people who are going to be on steroids and everything. And it’s to see, it’s, whether it’ll strengthen your bones. Because with steroids it’s got a long, long-term side effect of brittle bones and everything. So this is trying to make my bones stronger, like to see if it does help my bones getting stronger.
 

 

Joanna was undecided about taking part in a trial so she discussed it with her mum and asked the...

Did you make the decision quite quickly?

 

No, they gave us time to think about it. Because there was this, I think they came to see me when I, my mum wasn’t there. Because she owns a café, so she was, was quite busy. But when she got there, talk about it, and as soon as my mum got there she said, “Do it.” Because I was a bit unsure about doing it. But then she was like, “Do it, because they will keep closer an eye on you.” And it is so rare, what I’ve got, that they won’t be able to find that many people to do it.

 

Why were you unsure at the time?

 

Just, it was, I don’t know. I didn’t, I didn’t really understand at first about it all because they just came in and started to talk to me about the trial and I was like, “Oh.” And then they explained it more. But once my mum got back, well, they explained it again and then I think I took it in a bit more and I understood then and thought it would be quite a good idea.

 

Being closely monitored in the trial was reassuring for Joanna but she also wanted to help the...

I mean did you have to sign something first before you…?

 

I really can’t remember. I don’t think I did. It was such a long time ago.

 

Were you worried at the time?

 

When they said about the silent fractures and everything I was quite worried. And I was like, “I think I do want to because they’ll keep a close eye on me then with the medication that I’m taking.”

 

Is that why you, perhaps one of the key reasons you took part?

 

Yes, and to help, because they said it’s such a rare condition that they have to go all, around quite a few places. So I was just helping because there weren’t that many people to take part in it.

 

It sounds easy to take an extra tablet once a week but on occasion Joanna did forget, but because...

What does the trial involve for you? What do you have to do?

 

Yes, I have to take a tablet once a week and then calcium every night. Which is quite, it’s harder to remember taking it once a week instead of every day, because that’s just routine. But once a week is quite difficult to remember. And then the calcium to take every night. Because it’s not very nice to take them if you haven’t got juice in the house or something. It doesn’t taste nice.

 

Does it come as a liquid then?

 

No, it’s in a sachet and you’ve got to put it and mix it in your drink. And it’s not very nice to take either.

 

Is that off-putting?

 

Yes, it’s not very nice to drink. So you’ve just got to drink it quickly.

 

Drink it quickly, yes. What does it taste of?

 

It makes the juice fizzy. And then it’s got a bit of a weird taste to it that, I can’t really describe the taste. But it just tastes like juice but a bit weird.

 

Not pleasant.

 

No.

 

And what happens, does it matter, you know, like you say you forgot sometimes, was it okay to take it the next day? Or did you have to let them know that you’d forgotten?

 

No, it was okay to take it. I think, on the leaflet it said, “Just take it as soon as you remember.”

 

Did you, did you own up to them some- and tell them that you’d forgotten sometimes?

 

Yes, I did actually. She asked me if I had and I was like, “I’ve missed a few weeks.” Just because I’m sometimes really ill and I, like just before my birthday I was in hospital. And they think that I may have bowel disease now. But, so I’d have to leave, I’d, because I went in A and E I’d forget the, to take that in with me. And my mum wouldn’t have a clue where to find my, so it would just be quite complicated, yes. So there’d just be times where I’d be too ill and forget about it. Or there’s other things as well, like my, because I’m, in college I do shows and everything.

 

Acting?

 

Yes, musical theatre.

 

Oh, lovely.

 

Yes.

I’d like to talk about that as well. I don’t think we can. I just wondered what was the longest you missed then? How, you know, was it like just one you forgot to take it the one night? Or was it like did you miss a whole week at some point?

 

I think I missed a couple of weeks at one point.

 

Did you

 

Yes. Because it was just so complicated. Because if I took the tablet I’d have to sit up. And it would be too late of a night to take it by then because I’d just want to go to sleep because I had college in the morning.

 

Taking extra medication sounds easy, but it is easy to forget and Joanna was worried in case she...

Are there any times that you missed it?

 

Oh, yes, there was quite a few. But I just have to take it another day and then, and it just got quite complicated at one point. And then remembering the calcium as well and taking the sachets. Like if I stayed at my friend’s or something or my boyfriend’s, it, it was quite complicated to do.

 

Was it?

 

Yes.

 

Like you say, when you go out, because you’ve got a social, your social life.

 

Yes, it, so, yes. Because I’ve got to remember all my tablets anyway, but it’s just that extra thing. And then if you forget to do it, then you can’t do it again in the morning or something.

 

And was there a, you know, did you have to take them at specific times?

 

No, but I chose to take it at night because I’d be going to college and I’d be in a rush in the morning. So I’d take it at the same time as I took my tablets, which is at night as well.

 

So that was just a better time for you?

 

Yes

 

And you did that all the time?

 

Yes.

 

Did they say what will happen at the end at all, the end of the trial?

 

They might have done. I can’t remember, sorry. I can’t remember now.

 

I didn’t know whether you’d stay on something or just stop and then continue your normal medication?

 

I think it’s going to stop and I’ll continue my normal medication, I think. But with the tablet, it was also, that was quite difficult because you had to sit up or stand up for half an hour before you could lie down – yes, and go to sleep. So I’d have to take it like half an hour before I went to bed. And you couldn’t eat anything an hour before.

 

So there were some sort of rules?

 

Yes.

 

When you say you had to stand up, was that…?

 

You couldn’t lie down once you took the drug. So you had to sit up like in a chair or on your bed or stand up. You couldn’t lie down.

 

Did they say why that was?

 

No. They, it had the instructions on the bottle and they, oh, yes; they gave me a leaflet on how to take it and everything.

 

Did you ask why you did have to stand?

 

I don’t think I did. I just think I followed what they said.

What’s your, if you could tell your experience, what’s it been like?

 

With the trial?

Yes.

It has been a struggle. And if you forget it, you get so stressed about forgetting it and worried in case it’s affected it in any way. Things like, you know.

You think you might have affected the results of the trial?

If you, yes, if you forget, forget it. And it, you stress over that and then think, “Maybe I should leave the trial.” But then you’re thinking, “Well, it’s probably the best thing for yourself and for the other people.” Because there’s not that many people who can do, be in the trial.

And when you did forget, if you tell them, do you think that’s, would be the key thing? To sort of, if you do forget or something like that, or if you&rs

Joanna was worried that forgetting to take her medication would affect the trial results and...

Have you ever thought about withdrawing at all or stopping when it got complicated or –

 

Yes. Yes, I’ve said to my mum, “I think I should just…” Because I missed, when I missed them I thought, “It’s just going to affect the trial, and I don’t want to ruin it in case it does come out that I have got the actual, real drug, medication.” But she was just like, “Well, I’ll help you remember.” Because she wants it to keep an eye on me with my bones and everything as well as that.

 

Is that, is that your mum wanted you to stay in?

 

Yes.

 

And I know you said taking part, going back to that, just sort of the reasons, this, this interest in, do you think by taking part they will keep a, more of an eye on you?

 

Yes, they have done. They even said that, “Being in this trial, we’ll keep an eye on you more.” And some of the doctors said they will keep an eye on you more. Because they’re going to be examining my bones. And I wouldn’t know, with this medication I wouldn’t know if I had a silent fracture and the doctors wouldn’t know. So it just, that was one of the reasons. And some of the side effects, there’s like muscle weakness and that, so they could probably just help with stuff like that.

 

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

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.

 

Joanna thinks that making medicines easier to take for young people may help improve their...

Yes, I’d want maybe the calcium in a tablet, I’d find more easier to take, instead of a drink. Yes, that’s probably it. That would, I think I’d remember it more, taking it just with all my other tablets.

 

I think that’s a good, quite a good point really. Because it’s not always what you do, it’s how you do it, isn’t it?

 

Yes.

 

And especially if it doesn’t taste very nice.

 

At least you can just swallow it quickly, as it doesn’t taste as nice as a tablet.

 

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

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.