Lauren - Interview 64

Age at interview: 16

Age at diagnosis: 13

Brief Outline: Lauren was invited to take part in a randomised trial to understand better the side effects of background insulin used in the treatment of young teenage girls with Type 1 diabetes and when a carbohydrate diet is followed. Lauren was happy to take part.

Background: 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.

More about me...

Lauren is aged 16 years, 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. Lauren was invited to take part in a randomised trial to find out the side effects of background insulin used in the treatment of young teenage girls with Type 1 diabetes and when a low carbohydrate diet is followed.

Lauren was given plenty of information to read explaining about the trial and what it involved and was given plenty of time to make a decision and ask questions. She found the information a bit difficult to understand at first and asked her mum to give her a ‘summary’ of the main points. She says she was confused because she had always thought that the background insulin she was taking had already been tested to be safe. She hadn’t realised that they didn’t know all the side effects. She can’t remember all the side effects, but it was mainly about weight gain or weight loss. There were also a lot of medical terms that Lauren didn’t recognise. However, she asked the doctors and they explained everything to her.

Lauren wanted to take part to help other young people with diabetes and also hoped she might feel better about having diabetes. It was also reassuring that she could withdraw from the trial at any time and this wouldn’t affect her care, or other opportunities to take part in future trials.

Because it was a randomised trial, Lauren didn’t know which group she would be allocated to until she received a letter in the post to say which background insulin she would be taking. She explains randomisation as like ‘pulling names out of a hat’. Because all the tests and checks are done at her regular three-monthly hospital appointment it doesn’t take up too much time and doesn’t interfere with her school attendance any more than before.

Lauren is supportive of clinical trials in children and young people and would consider other trials in the future.
 

Lauren took part in a randomised trial on the side effects of a background insulin. She didn't...

The purpose of the trial is to see whether an illness, or the background insulin that you take when you’re on the carbohydrate regime is, makes you put on weight, has any side effects, if you lose weight or if it can, if it affects your, some part of your body. It’s just kind of that.

 

And just going back to that, because you mentioned also about not being tested, do you know whether it has been tested in young people before, this particular…?

 

I’ve no idea.

 

No?

 

I know that beforehand mum was on like pig’s insulin. That was what they used before. And Novorapid and all the other insulin’s at the moment. But I don’t have a clue about any of that.

 

And what’s background insulin?

 

Background insulin is, when you’re on a carbohydrate regime, you take injections for the carbohydrates and the sugars you eat. And then because you don’t eat at night or during the night, you need a bit of insulin just to keep you, your sugar levels flat. Because you’ve obviously got the high, you’ve got your, say you have breakfast here, well, your sugars are going to shoot up, but then you take your injection and they’re going to go down again. But in the night they, they fluctuate and then the background insulin is just to keep them steady. And sometimes people have to take them in the night and some people just have to take them either in the morning or, but at night as well. Depending on what your sugars are like in the morning and what your sugars are like in the evening.

 

I used to be on Levemir, which is one type of background insulin, and Lantus is another. And in the trial you were to, you were randomised, and whatever category you were put in you either had to trial Lantus or Levemir. And you’d see how they affected your body or how you looked, or your diabetes and how they affected you. So everyone was put in to a computer and you were randomised, so they never set you out into certain groups.

 

And how did you feel about being randomised in to a group?

 

Well, I thought it was quite cool actually. I quite liked the idea because I have my own imagination, so I had this idea that all these names would appear on the screen and they’d all go in to like a big fuzzy thing and choose groups. But obviously that doesn’t happen. But I found that quite fun.

 

Do you know how they do randomise you?

 

No, I don’t.

 

It’s usually a computer.

 

Yes, I know it’s computerised because they told me. But I just had this lovely idea, so I… quite enjoyed it.

 

So you just got an idea in…

 

Yes.

 

…your head and stuck with that? And what do, what if you were to explain to a young person what randomisation means, how would you describe it or explain it?

 

I would just describe it as kind of like pulling your name out of a hat and putting you randomly in to another hat or two hats. So say if everyone’s name was in a hat, and then you’d have two hats. And then you’d pick some, like five names out, but you didn’t know the names and you randomly put them in these two hats. And then you’d open the names at the end and whoever was in that hat would be for this and whoever was in the other hat would be for that. That’s my theory anyway.

 

That’s fine. And di

Taking part in a trial can help you to feel better about your condition, as well as helping...

So you kind of made the decision. Did you make it quite quickly?

I had, I thought about it, but I thought about it for a couple of days and then I decided that I wanted to do it. And I wanted to do this trial because it was the first trial that I’d ever done including, for diabetes. And to me, I felt like because I didn’t have a good time to begin with doing it, I wanted to help other people. And if this was one way that I could help them in the future, I wanted to do that.

Do you think that was your key motivation for taking part?

Yes.

Helping others? Was there some personal benefit as well, do you think?

I wouldn’t, I don’t know at the moment. I’m halfway through the trial, but the only thing it seems to be doing is hurting more. So not really.

But at the time when you were making the decision, did you think, “It might help me”?

Yes, yes, I thought that would help me. And I also thought that if I did the trial I might feel better about myself and better about having this illness, kind of disease kind of thing. I didn’t like it.

And did, you know, those things were going through your mind and you made your mind up. But did you ask questions at the time, after reading, and before making that decision?

I didn’t actually. I just thought, “I want to do it. I’m just going to do it blindfolded.” So I went in. Plus I couldn’t actually think of any questions. So it was just a, more of a case of, “Yes. Give me the information. If I have any questions, I’ll ask.” But I didn’t, I didn’t really because they more or less covered everything. And I just thought, “Do you know? I really want to do this. And I’ll do it no matter what” to be honest. When I get stuck in to something, I’ll do it.

You just, but did you like having that time to make that decision?

Yes, I did like not being rushed. And then obviously all the way through they’ve always said, “If you want to take, like go out of the trial, you can.” But I like the idea of staying in it for the; for the year, just to see what happens at the end really.

Lauren felt that taking part in the trial might help her feel better about having diabetes and at...

So you kind of made the decision. Did you make it quite quickly?

 

I had, I thought about it, but I thought about it for a couple of days and then I decided that I wanted to do it. And I wanted to do this trial because it was the first trial that I’d ever done including, for diabetes. And to me, I felt like because I didn’t have a good time to begin with doing it, I wanted to help other people. And if this was one way that I could help them in the future, I wanted to do that.

 

Do you think that was your key motivation for taking part?

 

Yes.

 

Helping others? Was there some personal benefit as well, do you think?

 

I wouldn’t, I don’t know at the moment. I’m halfway through the trial, but the only thing it seems to be doing is hurting more. So not really.

 

But at the time when you were making the decision, did you think, “It might help me”?

 

Yes, yes, I thought that would help me. And I also thought that if I did the trial I might feel better about myself and better about having this illness, kind of disease kind of thing. I don’t like it.

 

Taking a different type of insulin was painful for Lauren at the start of the trial, but she got...

Did they say what the side effects were?

 

No. That’s what they were trying, they, they didn’t say that there’d be like massive side effects, there were side effects. They were thinking that there could be, there’s possible weight gain and there was a couple of others, but I can’t remember what they were. But they said they just wanted to see whether we put on weight or whether we didn’t or if we lose, lost it because of this background insulin. But they said they didn’t think any others; there was any other side effects except weight gain and I think something else. But I can’t remember at all what that was.

 

And have you had any side effects, do you know?

 

I’ve put on weight. But that’s about it, yes.

 

And do you have to tell them that? Do they weigh you at all?

 

They weigh me, do my blood pressure, measure me, take my height. And that’s about it really.

 

And is that every time you go?

 

Yes, every…

 

For the three-monthly?

 

Yes. But I never have to do it when I go up the hospital because they normally send the results that have already been taken. So it’s not bad.

 

And you said there was more pain I think…?

 

Yes, my, the insulin that I’m taking, Lantus, I find is a lot more painful. And it’s also because I’ve got a small needle. I use a 4 millimetre needle instead of a 5 millimetre needle because I don’t like them. They hurt so much. But a 4 millimetre is nicer. But with the Lantus it stings so much more. And it’s just like, “Waiting for the pain to go now.”

 

So that’s when you’re actually giving yourself the injection?

 

Yes.

 

It’s more painful?

 

And then afterwards it stings a bit and it’s just like… And then you kind of question whether you really want to carry on. Then you’re like, “No. I will do it. I am fine with it.” And then you tell them and they’re, and they’re like, they say, “Well, do you want to drop out? Because you can. You’re more than welcome to drop out if you want, if you don’t want to do it anymore and we’ll put you back on.” But I’m all right with it after I’ve done it. It’s getting to the stage of doing it. But now it’s been down to 26, although it’s only four units lower than 30, it’s so much nicer. But, not much nicer, but it feels nicer.

 

It was reassuring for Lauren to know that if she chose to withdraw all her information would be...

Do you think it’s important they offer you that option to withdraw?

 

Yes, yes. Although to me, if I withdraw something, I know I haven’t given it my full, and that if I did withdraw, I knew that I weren’t fully committed in the first place. So when I think things through, and even though they give me that option, I prefer to think things through and make sure that if I do it, I will go to the end and do it. I don’t want to do it halfway and give up. So I’m doing it all the way.

 

It’s good, and they’re good reasons as well, you know, what you say. But I think a lot of young people need to know that you can opt out. It’s just a…

 

Yes.

 

…reassurance, isn’t it? Really that you don’t have to do it.

 

Yes, I like that.

 

Did they offer you, you know, when they say you can opt out, did they offer you, say, “Well, if you did come out, we’d still treat you”?

 

No, I think it was more of a case of if I opt out then they’ll destroy my files and everything that I’ve put in, and I think they’d send us a few things about the trial later on. But that was about it, I think. I would have been totally pulled out of that trial. And they said that if, in future if they had any more they would contact me, but then they, but my, all my files and that would be destroyed and everything. But I think that was about it really.

   

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

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.

 

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

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.

 

Lauren says it is important to ask 'why am I taking part and do I want to take part?'

I don’t know. You, “Ask questions about it and just make sure that you’d want to do it before you took part.” But never be afraid, because they’re actually very nice. Because sometimes you get a really big reward that you’re doing it, because of it. So it’s a nice thing to do. But at the same time you’ve just got to think, “Would I like to do it? And if I don’t, well, then…” Just, you can also ask if, like we asked, “If, if I didn’t want to take part, was there anything else we could do?” because we didn’t want to do it. But in the end I took part, so I didn’t do anything else for that. But, I don’t know, “Go for if you want to. But if you don’t, it’s not a huge problem at all.”

If you were going to ask a young person a question about their experience of taking part in a trial, like I’m doing, because you know what it’s like and you’ve got some insight, information, is there something that you would want to ask them?

 

I’d, I would want to ask them whether they’re enjoying themselves doing the trial. Because I find if you’re not enjoying yourself doing the trial, you’re not, you’re not putting your kind of like full effort in to it and it’s not going to, your results may not come back right. And if you’re not enjoying it, “Why are you doing it if you’re….?” So I think whether they’re enjoying it would be a good question. Because I think having fun with doing anything, like having fun doing homework is really weird, but if you’re having fun doing your homework you enjoy it much more. So, and that takes your mind off other things.

 

And do you enjoy…?

 

Yes, I do, I do. I have no idea why. But I like going up the hospital and, because they’re always, like sometimes I go to a university or sometimes I go to the hospital, depending, and that would be like, “Oh.” So, and you check out all these new surroundings that you’ve never seen before. And it’s just like, “Oh, I quite like this.”

 

So it’s all kind of new? So you’ve gained a lot from it? Do you think you know if there was anything you’d gained from it, what do you feel you’ve gained?

I’ve obviously gained confidence. Because I could, I, although when I know someone I can be quite weird and I come out with random things, but I can’t speak directly to people if I don’t know them. I’m quite shy and I like to hide away. But because I do the trials and I have to talk with all these people I don’t know about sort of personal stuff, but, or it is personal but it’s not, it doesn’t really bother me. But I kind of get more confidence out of it in a way. So I feel that’s kind of helped me.

Taking part in a trial has helped Lauren come to terms with diabetes. She is pleased to be taking...

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.