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TIA and Minor Stroke

Being invited to take part in transient ischaemic attack (TIA) research

Some of the people we talked to had taken part in a research study looking at stroke and TIA. This project is what is known as a ‘cohort study’, in which a group of people with a particular condition or set of characteristics are followed up long term. In this case, everyone who has a suspected stroke or TIA from a group of GP practices is invited to be part of the research, and is then referred to a research clinic. The results have already changed guidelines around the world on how patients with TIA are investigated and treated, having shown that the risk of major stroke in the few days after a TIA is very high; that those individuals at highest risk can be identified using a simple risk score; and that emergency treatment reduces this early risk of major stroke by as much as 80%*. Here people talk about how they were approached and what information they were given. Most were referred by their GP. Several people commented on how fortunate they felt to be offered this opportunity. Most people talked about a mix of reasons for taking part, including possible benefit to themselves as well as helping medical science and other patients in future.
 

When Phillip saw his GP, she explained the practice was part of a research study. As a researcher...

When Phillip saw his GP, she explained the practice was part of a research study. As a researcher...

Age at interview: 72
Sex: Male
Age at diagnosis: 71
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Now that’s, that’s a very, that’s an interesting question. I went and saw my GP and I explained what had happened, and she said, “I think you’ve had a stroke. Now, we’re a part of the [study name] programme and so what I would most strongly recommend to you...” - and she probably said something like this, but, you know, my memory has faded, and all that happened before erased everything. It’s eighteen months ago. I have trouble remembering things that are eighteen months ago. Always have. It’s not part of age.
 
And she said she recommended this. And obviously she gave me the choice, because I said, “Yes, do, please.” And so that’s when she called it. She didn’t say, “Sit up. I’m going to call.” She did ask me a question, because she said, “Would you like me to contact these people?” And I said, “Yes.” I said, “Yes, do let me contact these people. Yes, please.” But whether she offered me an alternative, like, I don’t know what the alternative would be. Presumably the alternative - yeah, I know what the alternative is because it’s on the notice board about FAST. And the alternative is, “Go directly, do not pass Go, do not collect 200, to your nearest Emergency.” So I guess in my case there’s a little local hospital, sort of one of these daytime hospitals, but it does have an Emergency during the day. And I suppose with hindsight, and of course this is all because it’s happened before, but with hindsight, if this happened to me, I’d go and see the doctor and she would send me off to our local clinic. And I would trundle over there. And they’re pretty effective too. And so they would presumably have then stuffed me into an ambulance or put me on a right bus for the hospital.
 
But, no, I don’t really know the answer to that, because it wasn’t important. She said, “Look, there’s this research study. Would you like to join it?” Well, of course, I mean, obviously I have to join it, don’t I? I mean, that’s what I do. I’m a researcher. I said, “Oh, wow, that’s great, fascinating”, not thinking that I’d had any event, and I was just going to be a control.

 

 

Anne had never been a research participant before. She felt lucky to be asked, and hoped it would...

Anne had never been a research participant before. She felt lucky to be asked, and hoped it would...

Age at interview: 79
Sex: Female
Age at diagnosis: 72
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What about the information you were given about the research project and how you were, how consent was taken? Did you feel that was well handled?
 
Yes I certainly did. No, it seemed to have been done in a most thoughtful way and understanding way. And I’ve only got a sort of gratitude to the whole system for how well it was run and how thorough it was, and the sort of, the dedication of the people who were running it.
 
Have you ever been in any research projects before?
 
No, I don’t think I have, [laughter] no.
 
No? First time?
 
First time, yes [laughter].
 
And when they, when they asked you if you wanted to be part of the research, what went through your head? What were you thinking?
 
Well, I thought this is an opportunity which one’s jolly lucky to be given, and it wouldn’t only be helping me, but I just hoped it would spread usefully for a great number of people.

 

 

John’s GP asked if he would like to take part in a research programme. He was happy to do so, and...

John’s GP asked if he would like to take part in a research programme. He was happy to do so, and...

Age at interview: 59
Sex: Male
Age at diagnosis: 58
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I feel extraordinarily fortunate that I live where I do, close to a major research group, who’ve been tremendous. They’ve communicated throughout this whole experience from day one what had happened, why it had happened, what was likely to happen, and what they were going to do about it. I was asked, “Would I like to take part in a research programme?” Very happy to do that. And throughout that research programme it’s been them that have told me what was required, explained it, made it happen, facilitated everything. So all I’ve had to do is go along with what they’ve – and that’s been nothing difficult, nothing disturbing, nothing unpleasant at all. And you actually feel you’re doing some good. What’s really reassuring is to know that you’re in the hands of people who not only care about you as a human, but they’re caring about this particular ailment. So that they are at the - as far as I can make out - they are right at the front end of probing what is, what’s happening, what the causes are and how to mitigate. It’s fabulous, delighted to have, that this happened here. What it would be like to be, to have a TIA in a country which doesn’t have our service, I don’t know. Or perhaps to, to have a TIA in the UK but to be a long way from a major hospital. I don’t know. I’m just very glad that it happened where it happened.

 

A few people were asked to take part in the research through a different route. When Brian had a TIA he was taken to hospital by ambulance so he didn’t see his GP at first.
 

Brian was approached about taking part in a research study while he was on the ward. He took part...

Brian was approached about taking part in a research study while he was on the ward. He took part...

Age at interview: 77
Sex: Male
Age at diagnosis: 77
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And at what point where you asked if you’d be willing to take part in the TIA research programme?
 
This was the day after I’d had the TIA, before they actually discharged me from the hospital. They came and had a talk with me etc, and said that I could be discharged, and the doctors moved away. And then one of them came back, the consultant came back, and said they were doing the sort of stroke consultation and he thought I would be a suitable candidate for it. Would I like to go ahead? And I agreed, because I can’t do a lot to help other people now as I used to, when I was on the ambulance service, but perhaps by providing information, whether it be sort of vocal information or physical information, it could help people in the future. And this is why I agreed to go ahead with it.
 
Were you thinking about any personal benefit that you might get from it as well, or was that not really a factor for you?
 
It wasn’t really a factor, but afterwards I thought, “Well, they’re going to keep a closer eye on me anyway now, so, what’s the point of refusing?”

 

Sometimes research studies need to include comparisons with people who do not have the condition – these volunteers are known as ‘controls’. Other family members may be asked if they would like to take part as controls.
 

Brian’s wife Rosemary agreed to take part as a healthy volunteer or ‘control’ in the research...

Brian’s wife Rosemary agreed to take part as a healthy volunteer or ‘control’ in the research...

Age at interview: 73
Sex: Female
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And I found this very good with the research programme, because I was able to go as a controller, because I haven’t suffered any heart problems or stroke problems. And I found that I didn’t panic over anything at all, and I would, my advice is to anyone else who experiences the same thing, do not panic but don’t hang about waiting. Get on to the paramedics to come out.
 
And with this, with this research programme going on, I was able to go along, answered a questionnaire, did the same sort of test as my husband was having done, and I don’t know what the outcome was, whether I was better at the answering the questions they put, or whether he was better than me. But it gave a sort of in-look as to how someone who hasn’t experienced any strokes or heart problems, and compare it with someone who has.
 
And I think a very good idea is for a wife, husband or partner to be involved so that you can ask questions, and know what might happen in the future and what to be aware of. And while we’ve been on this I’ve found that they’ve been very helpful in answering any questions that either of us have asked.
 
Right. So it’s a kind of a route into getting extra information for you, as well as helping them.
 
Yes, I think it is. Yes, that they can find what’s going on with, in different people, and also that those that are affected can get the information that they require and not being kept in the dark.
 
Do you think that’s different being part of a research project? Do you get more information, more time?
 
I think, yes, you do, because, normally, if you accompany someone on a normal sort of interview or a check-up then you haven’t got the same opportunities to enquire over things.

 

Generally people felt well-informed about the nature of the study, and having time to ask questions was an important benefit.
 

Angus got plenty of information about the research he took part in, and he and his family could...

Angus got plenty of information about the research he took part in, and he and his family could...

Age at interview: 61
Sex: Male
Age at diagnosis: 60
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They give me all their pamphlets on it, but explained it to me and then just give me the pamphlets afterwards, but it was all explained to me in the hospital' what they were doing, and what they were trying to do, and how many people were on it, on the study. And the time period, you know, what they were aiming for, you know. Yeah, and any question that I asked. And time wasn’t, it wasn’t like a quick, “You’ve got ten minutes to get out.” I could have stayed there all day talking to them if I’d have needed to. Time wasn’t an issue. You know, so I was made to feel, you know, that I could discuss anything with them. And like I say, my wife was with me that day and my daughter-in-law, and they asked questions as well, and that was fine with the doctor I was talking to at the hospital, you know.

 
Mm, good. Have you ever taken part in any medical research before?
 
No.
 
No.
 
No, not at all.
 
Would you do it again if it was offered to you?
 
Yes, I think so, yeah. Now I realise that, yeah, it could help somebody else perhaps, you know, yeah.
 
Was that your sort of first thought, when the GP first said there’s this research project that you can go into? What were you mainly thinking about, medical science or your own benefit or?
 
My own benefit to start with, yeah. Yeah, my own benefit to start with, yeah.
 
Yes.
 
I have to be sort of brutal and say that that’s what made me do it, you know. But now I sort of feel all right, and the doctors have sort of given me the all-clear, if that’s the right word to use, yeah, if I can help someone else now that’s fine. I’ve been helped, so now is the time that if I can help someone else that’s fine, yeah.

 

Several people commented that there had been benefits to them they had not thought about beforehand, including more intensive monitoring and a feeling that the research staff were more relaxed and able to spend more time talking to you than most NHS staff (see also ‘Taking part in TIA research’).
 

Anne encourages others to think positively about it if an opportunity to take part in research is...

Anne encourages others to think positively about it if an opportunity to take part in research is...

Age at interview: 79
Sex: Female
Age at diagnosis: 72
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Is there anything you’d want to say to other people about taking part in research, from your experience?
 
I think probably there is, that if you are given this offer, do accept it, [laughs] because I think it - apart from all the help and the support - I think it sort of opens doors that you probably wouldn’t have ever come up to in the ordinary course of things, but to be able to take part in some research thing I think is really a great privilege and a tremendous help.

 

For Vernon, personal benefit played no part in his decision to take part. He commented, “It’s common sense, isn’t it? I mean, if I can be of any help to anybody I’m only too pleased to do it. I can’t think of any other reason.”

*Rothwell PM, Giles MF, Chandratheva A, et al. Effect of urgent treatment of transient ischaemic attack and minor stroke on early recurrent stroke (EXPRESS study): a prospective population-based sequential comparison.
The Lancet [Early Online Publication, 9 October 2007]

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Last reviewed June 2017.
Last updated June 2017.
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