Screening for unrecognised heart valve disease
Reasons for taking part in heart valve disease screening
Anyone who is asked to take part in a medical research study can say no and this will not affect their care in any way. However, everyone we talked to had decided to take part in the heart valve disease screening study, and we asked them why they chose to get involved. It was common for people to mention a mixture of reasons, including wanting to help medical science and other people, as well as their own personal health benefit.
Medical research is important so we can learn how to treat different conditions better. But...
Medical research is important so we can learn how to treat different conditions better. But...
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I felt quite happy. I felt well informed and I didn’t feel uncomfortable about the idea. In fact I’m all in favour of taking part in studies, because I’ll probably learn more about myself and what my problems are and what, what I might be able to do about it, what the Health Service could do for me, than by being outside. So every time a study comes up I say, “Yes, please.”
Well, I mean there’s, obviously there’s a wider community interest, in that the more we know about a variety of conditions and what the outcomes are from various treatments the better. And so it’s, you could say it’s partly altruistic. I’m happy to be part of a club. But it’s also rather selfish, I suppose. I’m very happy to have people taking an interest in me.
Particularly as you already knew that you had some heart problems?
Yes.
Like Norman, in some cases people were particularly interested because either they or members of their family had a history of various heart conditions.
Cathy and Fraser took part because they were curious, and Fraser is keen on science. Cathy was...
Cathy and Fraser took part because they were curious, and Fraser is keen on science. Cathy was...
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And when you got the invitation letter, what were you thinking about why you might take part? Was it mainly to do with your own family history?
Cathy' Yes, I think so. And curiosity.
Fraser' I’m afraid I’m, with a technical background, I’m just the sort of person who will always put their hand up for that sort of study or, you know, if somebody’s collecting statistics or something like that. It was the way I worked, so I’m, you know, an early volunteer.
Cathy' Well, I’ve always just been curious, so, yes.
And the curiousness was about your own health, really, rather than the research?
Cathy' No, I’m just generally curious - yes, as well. I mean, yes, in this case my own situation did play a small part. But on the whole it was just curious, that’s all. I, just think, because I have no scientific background whatsoever, I’m constantly amazed, delighted, horrified, you know - delete as appropriate.
Lech saw the heart valve screening as an opportunity to get a 'proper check-up' without having to...
Lech saw the heart valve screening as an opportunity to get a 'proper check-up' without having to...
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So from your point of view when you were invited it was an opportunity?
Oh, yes. That was an opportunity.
That’s true. After I say, “Of course I will go. Why not? I have a proper check-up”, you know? Because to go to the GP, you know, they have to send it, and if it’s nothing serious, then - I worked for, as I told you, 25 years for the health service. I know, you know, they are busy people and I don’t want to bother them with something tiny. If it’s some small problem, why? That was my opportunity for a proper check-up.
And what with the letter was there some information about the project and what were your thoughts about the information you were given?
I think that it is very nice because a lot of people you are helping – people, you know, who are like me, like my sister. We never want to bother the doctors or stuff like this, just to go, “Oh, pain here, pain there.”
Did you have a chance to ask questions about the research before you took part in it?
No, no. They asked me if I volunteer and I say, “Of course I do it.” They asked me a few things, “Can you do this, this?” Whatever they asked I say, “Yes, of course you can do.” Even like you ask me now, I say, “I don’t mind.”
The idea of getting one’s heart checked was generally welcome. People said either they would feel reassured if nothing was found, or if something was found they would rather know about it than not know. Some felt reassured just because the NHS was ‘taking an interest in me’.
Carolyn expected to be reassured that her results were normal, but would like to know if there...
Carolyn expected to be reassured that her results were normal, but would like to know if there...
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So you went along thinking everything would be all right?
Everything would be all right – well, I didn’t know if everything would be all right, but I thought it would be good to know if there was a problem, and for reassurance that, you know, everything was healthy. I had no reason to believe it wouldn’t be, but as I say, because parents and grandparents died relatively young from heart problems, I thought it would be a good idea.
And the fact that it was medical research, did that have any bearing on your thinking?
Definitely. It, because it wasn’t a commercial company I thought it was bona fide research, and not just a gimmick to promote some kind of quack medicine. That’s a pet thing of mine [laughter].
Tell me more [laughter]. Have you had those leaflets inviting you to......
Oh, to take part, “Come and have a full body check and it will only cost you £40” or whatever, and I think, “No, if they’re going to charge, I’m not interested, no.”
And would you trust the results so much if it was a private company?
No, I wouldn’t, because I think they want to sell you something.
Yes. And the idea of research helping other people rather than you, how much was that a factor?
Yes, I think it’s very important, I do. Because unless there’s a control group you’ve got no comparison, so you need to know what the majority of the population is, compared to those that have problems.
Elizabeth was very ill as a child in India. Her mother remembered it had something to do with a...
Elizabeth was very ill as a child in India. Her mother remembered it had something to do with a...
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We were abroad at the time, we were in India when I was a little girl, so consequently my mum - I’ve spoken to her since, I mean she’s nearly 97 - but she really can’t remember the full details of it, unfortunately. But I remember I was off school for quite a while. And she seems to think that that was it.
She remembered when I asked her about this screening. So she said, “Well yes, you definitely had something but as far as I can remember I think it was to do with a valve.” So consequently, as I say, I was really more than pleased. I’d never have thought of it before, you see, because I’m perfectly well, I hope, and healthy [laughs].
And so consequently it was a blessing in disguise, really, because it indicated there was nothing wrong.
Of course people with valve disease often are perfectly healthy and have no idea that there’s anything wrong.
Oh, of course, of course.
Can you remember what symptoms you had when you were off school or is it too long ago to remember?
No, very tired. As far as I know, I was very tired, I didn’t have very much energy, I was quite lethargic. But that’s as much as I can remember.
Gosh. Interesting. So there were extra reasons to go.
There was, there was. Very much so, yes, there was extra reasons.
And what, was that the main reason you went along?
Oh no, no, because I would have gone anyway. Yes.
When you say you would have gone would that have been mostly because of the health benefits to you?
Yes.
Right.
Yes, definitely. Mm, because I wouldn’t have even thought about it if it hadn’t come through, you know, the letter hadn’t come through. I wouldn’t have even dreamt of going, because it didn’t enter my mind [laughs] mm.
Sometimes people assumed that there would be treatment available, though in fact mild heart valve disease may need no treatment. But people still felt because they were in the research study they would be monitored over the next five years, and if their condition got worse it would be picked up quickly and dealt with.
Pamela and Anthony took part mainly because medical research needs volunteers to improve...
Pamela and Anthony took part mainly because medical research needs volunteers to improve...
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And how did you feel when you got that letter? Were you, did you quickly make up your mind this was something you wanted to do?
Anthony' Yes we did, it wasn’t any problem to us. I mean, medical science will not advance unless people do this sort of thing so it’s, you know, it’s fair enough. Having worked in a research establishment, I’m used to that sort of thing going on and realise what happens, and you know, we were both in full agreement with it, so it’s no problem.
And have you got any family history of heart problems either of you?
Pamela' My father did have something because he died when he was 41, but he didn’t die of a heart condition. But he hadn’t got a very good heart but, you know, in those days, it was a long time ago, I don’t know exactly what he had because he died of food poisoning, you see, in the war.
Anthony' I’m not aware of – sorry - I’m not aware of anything on my side with people having heart problems. My father died at 94, and as his doctor said to him, “It’s just old age, you know, everything’s just wearing out.” And it was as simple as that, so.
Pamela' Mm, yes.
So you weren’t particularly expecting anything to be wrong?
Pamela' No.
Anthony' No.
No, okay. At the same time, were you hoping for some benefit from the programme for yourselves?
Pamela' Well, we did think that if they find out there’s something wrong, it’s better to find it out now, than us carrying on thinking there’s nothing wrong with us and there is something [laughter], you know.
Anthony' Yes, that’s true, you know, I think this is, it’s better to look at these things at the early stage rather than letting things go on and then it becomes too late.
Alongside personal health, the idea of helping advance medical knowledge was a common theme.
Ursula is now 82 so the research is more likely to help others than herself. She was happy to...
Ursula is now 82 so the research is more likely to help others than herself. She was happy to...
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Well, a few weeks ago, or a few months ago, I received a communication asking me if I were interested in a program about monitoring. And I thought it might be good idea. I had no idea I might need help, or anything was wrong. But in spite of everything I thought, “It can’t do any harm. It may do some good.” So an appointment was made and I went to this.
The nurse did the necessary…
Screening?
She did the test, and there she told me then that I seemed to have a slight problem. There appears to be a tear in a valve, in a heart valve. I had not been aware of any problem before, but this has left me rather wondering how serious it might be, or it might become. So when I’ve been asked, when I was asked to, if I would be prepared to take this further I’m quite happy to do so, if it helps. It may not help me, but it could possibly help in the research. So from now on I’m quite happy to help if I can.
When you got the letter asking you to go for screening, did you have to think very hard about whether you wanted to do it?
No, not at all. No, I’m quite happy to help.
Right. And were you thinking at the time that there might be any benefit in it for you, or were you mainly thinking, “Oh well, I’ll help somebody’s research”?
Precisely, it’s my idea. And I thought, “Well I’m now 82. It may help somebody else.”
So you weren’t expecting anything to be wrong?
No, I wasn’t. I wasn’t, I was totally unaware that anything could be wrong. I always felt quite fit and well. Although I had experienced slight out of breath and tiredness occasionally, but considering my age I accepted it.
Helping other people is important to Brian and his wife, and it was an easy decision to take part...
Helping other people is important to Brian and his wife, and it was an easy decision to take part...
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When you got the letter, what were your first thoughts? Was it something that you decided about pretty quickly?
Oh, yes. I decided straight away that I would like to have it looked into, for my own benefit and, as I say, for other people if it will help. So this is the reason why I like to take part in such surveys or whatever’s going on, providing I think it’s one that could benefit myself or other people.
Have you been in other research projects in the past?
No, I don’t think I have.
And if someone came to you with another one in a few weeks’ time, what would you think?
It depends on what it was for and if I thought it would benefit other people, besides if I thought I had a problem with it as well. Then I would think about it seriously.
Yeah, and your wife also got the letter and.
She’s had a letter, and she went for the scan, but the scan come back that everything was okay.
And did you talk about it together? Did you discuss it?
Well, we always talk about scans and everything like that, and she always says that if something comes along to benefit other people, then we should take part, and this is the way we think, along the same lines, really.
Okay. So it wasn’t a big decision for either of you?
Oh, no, no, no.
Susie thinks her husband might not have needed a pacemaker if there had been more research in the...
Susie thinks her husband might not have needed a pacemaker if there had been more research in the...
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Well, I think it worked both ways. I was thinking of my benefit, of course, and I was thinking of helping other people. And my husband’s just had a pacemaker put in, you know, and perhaps if they’d have had this years ago he wouldn’t be having it today. So really and truthfully speaking I think it’s worked out in many ways, it has.
Sometimes there was a sense of gratitude for care from the NHS or gratitude for what past generations of research volunteers had done. This could make people feel they had an obligation to take part – even if, like George, they were not very keen on volunteering.
Just under half of the people invited for screening so far have agreed to take part, and just over half decided not to. We were not able to talk to anyone who decided not to take part, but we know from other research that anxiety about getting a frightening diagnosis is a common reason for saying no to screening. Other reasons may include anxiety about the procedures involved – with heart valve screening the scan is painless and non-invasive, but it does involve undressing to the waist, which may put some people off. (See comments in ‘The screening appointment – having the heart scan’). We also know that some people may not take part in screening because it is difficult to find the time or because access is difficult. This is one reason why the research team wanted to hold the first appointment in local health centres, but even so some people have told the research team they did not want to travel to and from appointments. Other reasons people have given to the research team for declining to take part also include having too many other things wrong, or being too old.
Last reviewed August 2016.
Last reviewed August 2016.
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