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…

Age at interview 77

Gender Male

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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.

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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…

Age at interview 68

Gender Male

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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.

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Rene and several others in her family have had heart problems. She was conscious both of her own…

Age at interview 84

Gender Female

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I was very interested in it because there’s been so much heart trouble in my family.

And can you tell me a bit about that?

Well, my mother and father both died of heart problems. And I lost a brother age thirty-nine with heart trouble. And I have a daughter now who’s fifty-six and she’s had a valve operation, a repaired valve, and that was about five years ago. She’s still having trouble and has an awful job to lead a normal life. And we’ve got similar problems, but she’s got a weight problem – she’s over twenty stone – so I think that adds to her problems. But we’ve got similar problems like the valves and things like that. And we find that we have bad turns. I’ve had bad turns since I was twelve, when I had a rheumatic heart, and I had dizziness then. But now over the years I’ve had bad turns when I cycled, swam or anything, and found that I had to rest up for a few days afterwards. But as I got older – I’ve managed to have three children – I’ve lived a pretty full life, and I’ve travelled, and I’ve just enjoyed my life very much.

That’s good. Tell me about these bad turns. What do you mean by that? What happens?

Well my heart starts racing. I feel as if I’m going to collapse. And my blood pressure usually goes up to over 200 these days. And I find that I have to rest for a few days after it. But recently I hadn’t had so many. But I was a migraine sufferer and I think that, on the whole, I did very well considering all the things that I had wrong with me, but I’ve always enjoyed life.

And in terms of your heart problems, and specifically the heart valve problems that you have, do they worry you much?

Well, you get to learn to live with it. I mean from twelve I was told, my mother and father were told, that I was never to bath with the door locked or anything like – this is, I’m talking about 1939, this is when I was twelve. And of course I wanted a bike and things like that and they’d never stopped me. But of course I’d have the consequences maybe the next day if I cycled too far. But really – and of course I got married and I wanted children and my mother and father were worried. But of course I’m rather wayward [laughs].

And in terms of the heart valve screening, you got the letter and you decided you’d like to go along for that.

Yes.

So can you tell me what made your mind up about going?

Well, I just like to think that I can help a bit. As I said, I have the, with my family history, and now I’ve got a grandson who is sixteen, and has got his first pilot license, which I’m very proud of. But they found with his medical for this, they found a murmur and I’d like to know that he will benefit from it.

OK. So you thought that it might help.

So I thought it might help him some way. But also I’m booking a ninetieth party and I want to hang around for that long [laughs].

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Lech saw the heart valve screening as an opportunity to get a proper check-up without having to…

Age at interview 78

Gender Male

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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-u, 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

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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…

Age at interview 69

Gender Female

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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 £4 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.

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Elizabeth was very ill as a child in India. Her mother remembered it had something to do with a…

Age at interview 76

Gender Female

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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.

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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…

Age at interview 78

Gender Male

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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.

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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…

Age at interview 82

Gender Female

Age at diagnosis 81

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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 researc?

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.

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Helping future generations was Anne’s main reason for having heart valve screening. She was…

Age at interview 67

Gender Female

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Well, when I first got the letter I thought it was a fantastic idea for anybody. To help anybody out is ideal, because otherwise you don’t learn. So when I got the letter and I had the appointment, I was quite pleased to go and have it done.

And then after that I had my letter to say everything was perfect, which was a relief. Otherwise I wouldn’t have known anything. So I’m very pleased to be on this. So I hope to carry on and help whenever I can.

When you first got the letter, were you interested to go along for your own health reasons as well?

Well, not really, because I didn’t think there was anything wrong anyhow [laughs]. But no, I done it to help other people, you know, like children and, you know, the young generation – everybody, really. Because if you don’t learn from me and how I’m feeling, or if I have a problem – I know that I’m all right now, but if I feel unwell or I feel a lump or something, then straight away I shall know it’s from this year and it’ll be early stages if they do find anything. So I was quite pleased with it, very pleased.

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Helping other people is important to Brian and his wife, and it was an easy decision to take part…

Age at interview 71

Gender Male

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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.

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Susie thinks her husband might not have needed a pacemaker if there had been more research in the…

Age at interview 74

Gender Female

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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.

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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.

George felt he ought to take part to help others, especially since his wife had a heart attack…

Age at interview 86

Gender Male

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And when you were deciding whether or not you would take part can you tell me a little bit about what you were thinking at that time?

Well I was thinking if I am in a position to assist in anybody’s medical research then I ought to do it. Particularly as twelve months ago the wife went, had angina, finished up with a heart attack. And the cardiologist virtually saved her life. I can remember that clearly. And I supposed that was the motivation to, triggered me to agree to this.

So that we could find out more about…

That’s right. I thought that if there is anything that I can help with or, you know, as a person then I ought to do it in case I can be in a position to help somebody else in the future.

And were you thinking that you might be able to get some benefit for yourself?

Not benefit for myself. But I thought probably once you got there, if I do start sniffling in the cold, I mean, you’d probably do something to get rid of it to keep me going. That sort of thing [laughs]. But no, not seriously.

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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.