Screening for unrecognised heart valve disease
Feelings about heart valve disease screening and general health
One of the possible drawbacks of health screening tests is that they can make people feel anxious, and this is known to be one of the main reasons why people decide not to take up the offer of screening. People may get worried about the tests beforehand, even if nothing is found. If people discover they have a mild condition but no treatment is recommended, this too can cause anxiety. As part of the research, the team has been using a short questionnaire to check if the process is making people feel anxious. The results suggest around 9-10% of people have what is called ‘clinically significant’ anxiety following screening, but some specifically said it was not triggered by the screening. Over 99% said they would have screening again.
Update June 2016
Most people in the study found the scanning process acceptable, without causing undue anxiety, and the vast majority of those screened (more than 95%) said they would have echo screening again.
Update June 2016
Most people in the study found the scanning process acceptable, without causing undue anxiety, and the vast majority of those screened (more than 95%) said they would have echo screening again.
Everyone we talked to had decided to take part in the screening study, but George took a while to make up his mind to go. He explained that he does not like the idea of going to the doctor and being told he has something ‘incurable’.
George describes himself as someone who is not very health conscious and does not pay much attention to healthy lifestyle advice (though his wife does).
Peg and Roy also explained their feelings about screening and health.
Roy sees himself as quite lucky health-wise and does not worry about it much. Peg has had more...
Roy sees himself as quite lucky health-wise and does not worry about it much. Peg has had more...
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Roy' I went along for the ride. [Peg' laughs] So to speak.
[Laughs]
Roy' That’s right, isn’t it?
Peg' I coerced him into going sort of thing because, you know, we’re both getting on.
Roy' That’s one of the reasons. I’m past my sell-by date aren’t I, now? So, you know.
Peg' Poor old thing.
Do either of you, have you been for any other kinds of screening? Have you had the prostate screening or?
Roy' I haven’t, no. No, I haven’t had any of it.
[laughs]
Roy' Only to have this up the road.
Peg' Roy tends to [sighs] let things ride, sort of thing [laughs]. I think he had enough when he was a youngster and that one, and as I say, touch wood, he’s been very, very lucky, very lucky.
Do you sort of consciously try to keep fit, and things or not even that particularly?
Peg' We do make an effort to go down, you know, walk down the road.
Roy' Oh, yeah, I go down there every day and get the paper.
And I open one eye in the morning, close it [laughs].
[Laughs]
Peg' We don’t, we don’t exercise, if that’s what you mean.
Roy' No, no, no, because mind you--.
Peg' I mean, when you were working you [clock chiming] were quite.
Roy' Well, I had to be, didn’t I? Active.
Peg' Active then. But I didn’t. I just -
Roy' Sit around, you do.
Peg' --sit in a chair in front of the screen.
Peg said Roy only went for screening because she made him go (see also ‘Being invited for screening’). While not everyone would agree with the suggestion that good health can be down to luck, there was a certain resignation to the idea that in older age you can expect some illness. This could make people feel vulnerable – or it could lead to a feeling that there was no point worrying, because there was little you could do about it. (Certainly some people who decided not to have screening have told the research team that at their age they felt it was not worth getting checked out). Sometimes people felt a bit of both.
Hugh never used to worry about his health but now feels he has reached a 'vulnerable' stage in...
Hugh never used to worry about his health but now feels he has reached a 'vulnerable' stage in...
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How do you sort of regard yourself as someone in relation to thinking about your health? Do you worry about it a lot, or do you not take that much interest?
No, I don’t. I’ve got Barrett’s oesophagus and so I’ve been going in for endoscopies and stuff like that, and so that started making me think, “Oh, you’re quite vulnerable.” I got that in my fifties, I think. And then a cousin had a massive heart attack. One of my uncles had a triple bypass. And I started to think, “Mm, you’re getting to the vulnerable maybe stages” and that. So that’s why I’ve, you know, got involved about it more.
So it’s that sort of family history in the background that’s--
That made me think. And yet all the time I’ve - even with the oesophagus, the GP said that he thought that it could have been there from day one. But the cousin, he’s sort of had no problem since. He’s fitted with a pacemaker. But it started me thinking, “Well, I’m his age, or maybe a year older, and it could happen to me.”
And what about other sort of health screening? Have you been for any other screening? Have you been invited for prostate screening or bowel screening, or anything like that?
No.
No.
Although the local GP, who’s now retired, he had had prostate cancer, so I have done the blood tests. They do that, I think I’m due again in June. So they keep an eye on that. But it was the fact that he had had prostate cancer, so once if a GP has had it he’s going to be on the ball with you on that, I suppose, isn’t he? And they’ve all come up natural.
Generally Brian feels fit. He is concerned about his heart valve problem and whether it can be...
Generally Brian feels fit. He is concerned about his heart valve problem and whether it can be...
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How do you sort of feel generally about your health? Are you someone who thinks a lot about your health, or is it not something you think about much?
Well, obviously I’m concerned if I think I’ve got a problem, but I don’t think of it daily as I’ve got something wrong with me, because I feel quite fit and healthy, really. As I say, I’ve even got a monitor, which I do take occasionally for my diabetes, keep an eye on it myself, and it’s usually normally below the seven mark. So I find that I just have a yearly check-up every, annual check up with the surgery for it.
Do you do any other kinds of screening? Have you had the prostate screening or bowel screening?
No, no.
No, okay. Would you if those were offered?
I would think about it, yeah.
We were talking a little bit earlier about the problem of screening, and then finding something, and then not knowing what you can do about it. I don’t know if you want to just say a bit about that.
Well, obviously, if I had a screening and I found there was a problem, then I would like to take it further, look further into it, see what good things and the bad things are about it. But otherwise that’s as far as I would think, I think, at the moment.
And if they find something, but then there’s nothing they can do about it, how would you feel about that?
Well, I would feel concerned, but I would have to accept that it was a thing of life, especially at my age. Then you’ve got to think, getting to my age now, you’re going to get these things come along, which probably may concern you, or may not. But I suppose it’s a thing with age, I look at it, in lots of things.
Anthony thinks at his age health problems are unavoidable. He would rather know if something is...
Anthony thinks at his age health problems are unavoidable. He would rather know if something is...
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Well, I suppose a positive thing is that I’ve got something, I mean, I’m 81, so you don’t’ get to 81 without having some defects or other. If, if you, if it was we’d to, live forever sort of thing, wouldn’t we? But, I mean, no, you get to 81 and, and I feel very pleased that, well you found a little thing but it’s something which I can live with, which is all right. And as I say the fact that, medically that you now know that I’ve got this, if anything happens in the future then they’ve got a good claw, you know, good reason why, or not a good reason, but they know something which it could possibly be. They’re not going be having to search. They, they’re, you know, for something they, they know that that’s there and that’s it.
Yeah, very good. I think it’s I’m quite happy that I know I’m even happier the fact that it hasn’t [laughs] going to shorten my life or do something like that to me. And I think it’s a good thing. You know, there’s no point in burying you head in the sand if you’ve got an ache and a pain somewhere It’s really far better to know what it is. Whether you decide to do anything about it afterwards is up to you entirely. But it’s you know, I think it’s better to know what you’ve got than bury your head in the sand and do nothing about it.
And is there anything you think you could do about it?
[Sighs] I’m not aware of anything that I could do. You know, I’ve just, I’ve, I try to eat sensibly. I try to have reasonable exercise. I try to live a sensible life. And I think that’s important. You know, I’ve never been interested really in having a lot of, to drink or anything of this sort of thing but, I mean, you just have to be sensible about things, don’t you? That’s my feeling about life [laughs].
And do you think it’s made you be even more sensible about your life and take care over what you eat and that sort of thing?
It’s possibly made me sort of think a little bit more about not doing sense, stupid things. As I say, with my present situation in having, you know, lost Pam, things like car have become very important to me living in the country as I do, so, therefore, I’m very, very careful when I go out, as I will be going two or three time this week, not to drink. Not to, I mean, I might have one drink but that’s not anymore no more than that. And you know, just be sensible about things. I’ve never smoked so I’ve never had the problem with smoking and I feel sorry for people that do start and smoking at young age and find it very difficult to get over. And I feel quite pleased that I haven’t smoked because I feel that if I’d spent all that money on smoking, I would not have been able to do a lot of the things that I have done since. I spent, as I’ve said to you, I’ve spent a lot of money on holidays and things like this which we both thoroughly enjoy and you know, I think this is, you’ve just got to be sensible in life. You know, if you want to do something you do it and that’s what my mother always taught me. She always said to me, “If you want something boy and you can afford it, have it. Don’t put it off till tomorrow because tomorrow never comes.”
Like Anthony, Norman thought that it was better to know if you had a problem, though he could see others might not feel the same.
Norman would rather know about any health problem and have it monitored, but some people might...
Norman would rather know about any health problem and have it monitored, but some people might...
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And just thinking back on your whole experience of being involved in this screening project, how do you feel about it?
Well, quite positive. I mean I, let me think carefully about it. I’ve always been very ready to be a participant in any investigation which is centred on me. I [laughs] I like the idea that people are taking an interest in me, but particularly, I think, in health. If a condition you have is being monitored that’s all to the good. So fine.
And can you think about any negative things that have come out of your experience?
I can’t. No, I think it may be that, you know, if you have a more serious condition then it’s possible that having your attention drawn to damaging changes or a downward slope might be worrying. But I’m in the happy position where conditions that I have been well treated. For example, when I had a couple of stents put in three years ago, I mean that cracked a problem and so that’s quite positive. But, I can imagine that for, for some people you might finish up with a worrying situation. I mean, if you told me that... Well the joke I like is when you say to the doctor, “How long have I got?” And he says, “Well, don’t buy any long-playing records”.
[Laughs] OK. So being involved in this hasn’t made you worried in any way? So having a focus on the fact that you might have a problem with your heart hasn’t worried you because it hasn’t been too serious?
No, not at all. No.
Norman took the view that ‘forewarned is forearmed’. Others agreed that knowing about a heart valve condition – even if it needed no treatment for now – could be useful information in future, especially if it started to get worse. Even if it could never be treated people could see possible benefits in knowing. For example Ursula (who did have a heart valve problem) said, “You can come to terms with it, even if there is nothing to be done.” Carolyn (who didn’t have a valve problem) agreed with this.
Carolyn would encourage people to have heart valve screening. It's reassuring if nothing is wrong...
Carolyn would encourage people to have heart valve screening. It's reassuring if nothing is wrong...
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I would say there’s absolutely no need to be apprehensive, it’s in no way uncomfortable, and it’s very reassuring to know either way, if you’re clear or if you do in fact need further investigation. I think it’s always better to know than be one of these people that thinks, “Ignore it and it’ll go away” - because it won’t.
What would you feel about something where they told you there was a problem, but there then wasn’t anything they could do about it very much?
Well, that’s it, you know. If there’s nothing you can do, there’s nothing you can do.
Would you still rather know?
Oh yes, yes, because then if there are plans that need to be made you can get on and do it.
It’s often one of the problems with screening, that they can pick up problems but then it’s unclear what you should do about it.
But then I would say, “Well, if I’ve had this problem possibly since birth and it’s not affecting me so far, why worry?”
Several people had taken part in other forms of screening for similar reasons – for example screening for breast cancer, cervical cancer, bowel cancer and prostate cancer. Both Elizabeth and Pamela had opted to continue with breast screening past the age of 70 (the age at which the NHS currently stops issuing automatic invitations); Ursula was not aware you could choose to continue being screened, and thought she might ask her GP about it. Elizabeth explained how her attitudes had been affected by her husband’s screening for aortic aneurysm. (This is a weakness in the main artery from the heart. If it ruptures (bursts) it can be fatal).
However, there is still a lot of debate about whether screening is a good idea, for example if there is no treatment available, or if it is unclear which treatment (if any) is best.
Fraser has had prostate cancer screening, but he knows that the results can be hard to interpret....
Fraser has had prostate cancer screening, but he knows that the results can be hard to interpret....
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Fraser' Yes, it’s not so much screening, it’s just that if there is a problem, then, you know, it makes sense to go and --
Cathy' Go and get it fixed, if it can be fixed.
Fraser' -- go and talk to the medics and see what they say.
That’s quite an important issue about getting it fixed, if it can be fixed. And as you may know there’s quite a lot of controversy about prostate screening--
Fraser' Mm.
--because it’s unclear what is the best treatment. Or none at all might, might even be the best thing. Have you had the PSA, the prostate specific antigen?
Fraser' I did actually, because very sadly we lost a close friend through that. And you get to that sort of age where these sorts of things happen, happen to some of your contemporaries. And while you can stop smoking and take exercise, there are some things that you can’t control. And, yes, I had a PSA test done and looked at it. And my doctor was very good. You know, he sort of said, “Well, what will you do with the number?” And I’d already thought that through. So, and there had been discussions around, again with numbers of our contemporaries, you know, that, “What are you going to have tested? And then what will you do with the result?” So, fortunately my, my result was very low, so that’s fine. But, yes, there are issues with screening and especially, you know, with the numbers of false positives. And do you end up then getting treatment for something which actually isn’t a problem? And, you know, there’s a whole mare’s nest in there.
Yeah, I mean, which is why I suppose it would be interesting to know what they tell you about the, the heart condition and whether there is any --
Cathy' Yes, it will.
-- treatment for that.
Fraser' Yes, that’s right. And we’re both on statins because we have mildly elevated cholesterol. And of course you only have to put statins into Google and, you know, you’re--
Cathy' Yes, you’re doomed.
Fraser' --you’re deluged with information, both pro and con, you know, as to whether it’s the pharmaceutical industry making vast profits because they want everyone, the whole population to go on statins, or whether statins really genuinely do reduce the incidence of strokes and cardiac events, or - and whether or not they have side effects like muscle pains and memory loss and all of these other things. And it’s very, very hard for the layman to unpick that. Because once you set up a mechanism for bulletin boards where people can post their, you know, their experiences on the Internet, you’ve only got somebody to go out and say, “I started statins last week, and today I tripped over the kerb coming out of the supermarket. So I think statins are bad.” And, you know, there’s a huge amount [laughs] of that sort of correspondence which you have to wade through if you, and be careful about it.
Norman's GP thinks screening for prostate cancer is a bad idea, but Norman thinks it's a useful...
Norman's GP thinks screening for prostate cancer is a bad idea, but Norman thinks it's a useful...
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Have you had PSA testing?
Yes, I asked for that. My GP thinks it’s a bad idea, because it, because it’s, you know, there are a lot of negatives that are wrong and a lot of positives that don’t matter. My attitude is simply that PSA, although it may be a crude test, it seems to me if every couple of years you do a check on whether there’s been any change, it’s monitoring the change rather than an absolute figure, which is helpful. And having, I’ve now five or six friends who have prostate cancer and who’ve had various treatments, all very successful, and I’m all for early treatment if I have a problem.
(See also our site on ‘PSA testing for prostate cancer’ and ‘The pros and cons of a national screening programme for prostate cancer’).
Screening for heart valve disease is not routinely available in the UK, and the screening research project will give us new evidence about what happens to people who have a mild condition without symptoms. This in turn will help us know whether screening and early detection could prevent more serious illness, or whether the condition remains mild and screening is not necessary.
In addition to screening people talked about their more general attitudes to looking after their health. Again, it was recognised that as you get older there may be a limit to what you can do – Cathy, for example, explained that back pain problems made it harder for her to take exercise, and Anthony said, “Up until I was 60 I was playing squash about four or five times a week. Well, I don’t think I could go and play a game of squash now…But I can still walk several miles now, today. I’m lucky.”
It was quite common for people to draw a distinction between being careful and looking after yourself on the one hand, and being a hypochondriac. Norman, for example, said, “I’m not a hypochondriac, but I’m very, very tuned in to the idea that if you think your condition in some way is changing, it’s worth asking a specialist what’s happening, on the basis that on most conditions early treatment is the best approach.”
Susie says she is not a hypochondriac, but she tries to keep active, she doesn't smoke, and she...
Susie says she is not a hypochondriac, but she tries to keep active, she doesn't smoke, and she...
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So you’ve got quite a bit of heart disease on both sides of the family, your husband and your sister.
Yes, but I think my sister’s was brought on by smoking. And I mean, we’ve never had a car, so we’ve always exercised, walked, and of course my sister, they always had a car, and I think, really and truthfully speaking, what with a car and what with smoking it doesn’t help, does it? And she realised that. But, thank God, you know, she’s done remarkably well, she has.
Do you sort of see yourself as someone who pays a lot of attention to your health?
I’m not a hypochondriac, and I don’t very often go to the doctor, and if I think I can sort something out for myself I will. I’m a vegetarian, and I do take a multi-vitamin, which I’ve taken for years and years. I’ve been a vegetarian for nineteen years, and I think that’s really helped, and we have a good staple diet - fruit, vegetables. And you know, walking, and I think that goes a long way, it does.
So you’re not someone who normally sort of worries about your health, particularly?
No, I don’t. I just make sure that, you know, things are in working order really, you know, to make sure that everything’s okay, and I just sort of carry on and look forward to every day doing different things and that. I like gardening. I walk down the town to do the shopping and I - well, I looked after my grandchildren for fourteen years, you know, and it’s only three years ago I packed up looking after them. And I think that’s really helped keep me active. And, you know, I do worry about keeping active. You know, I don’t want to end up, you know, not being able to do anything for myself. That’s one thing I don’t want. So, hopefully, you know, see how things go.
Cathy and Fraser say they don't worry about their health, but they are conscious of it and try to...
Cathy and Fraser say they don't worry about their health, but they are conscious of it and try to...
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Would you regard yourselves as people who are normally quite interested in your health? Do you worry about your health?
Cathy' Not worry, but, so much as try and make sure we’re fit. I mean Fraser goes to a gym three, four times a week. And it’s a regular thing. He just does it.
Fraser' Yes, yes, yes.
Cathy' I have a physiotherapist to whom I go regularly, and I have a, an exercise regime, which I do at home.
Fraser' Cathy has a lumbar scoliosis as well as arthritis.
Cathy' Oh, well, I’m just falling apart.
Fraser' I’m going to hire her out as a study project for medical schools. But --
Cathy' It could be quite useful for somebody [laughs].
Fraser' Yes, yes. But I don’t think we worry about our health, but we are very conscious of our health.
Cathy' Well, it keeps digging you in the ribs, doesn’t it? The wretched thing [laughs].
Fraser' Yes, yes. We’re nearly 70 and so, you know, we consciously try to have a healthy diet and take exercise. We managed to give up smoking thirty years ago and that sort of thing. So we, we are very health-conscious but I hope not hypochondriac.
Cathy' No.
Have you been for other kinds of screening tests?
Cathy' Ah, well, I have a gynaecological problem as well as everything else, so I’ve had tests as well [laughs].
And mammography, do you go for the breast screening?
Cathy' Yes, yes, yes. I had one, and I’ve just had a clear, a letter back saying it’s clear. So that’s one thing that I can forget about. Good. But otherwise, yes, I mean, I do as I’m told, medically speaking.
For people with mild heart valve disease, the research team advises that there is no need to alter your lifestyle and you can remain as active as you would like. Lech said he had tried to cut down on fatty foods, which is always sensible, but generally the advice is to carry on just as before.
Ursula is not affected by the condition and it has not changed her lifestyle at all.
Ursula is not affected by the condition and it has not changed her lifestyle at all.
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And before you went for your follow up appointment were you worried about anything?
Not at all. Not at all.
And how do you feel now that you know that you have these problems?
Well, [sighs] I’ve lived a good life up till now and I see no reason why I can’t live a few more years. I don’t think it seems to be bothering me. I certainly don’t dwell on it.
I don’t dwell on anything, I’m not a hypochondriac. So, no I just take each day as it comes and make the most of it [chuckles].
And have you continued to do everything that you did you before all of this happened?
Absolutely. Absolutely.
So it hasn’t changed any of your activities?
Not at all. It has not changed my lifestyle at all. I’m still active and do everything I set myself to do.
Looking back Brian is glad he had screening. He recommends it to other people, and says his...
Looking back Brian is glad he had screening. He recommends it to other people, and says his...
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And thinking about the whole experience, right from being called for screening to go through that first appointment to your second, how do you feel about all of that now?
I’m glad I’ve done it to be honest because, as I say, it’s, if there’s something wrong it puts my mind at rest, which obviously it, I found that everything was OK as far as I’m concerned. But I think that if it’s being done to look into deeper things for other people then I’m quite willing to try to help. I’m that kind of person. You know, if there’s something that they could find out through checking on other people and it benefits others that’s my philosophy that it should be done I think.
And did they tell you that they were going to monitor your two leaky valves now?
No. They, as far as they were concerned I’d finished with it all and that’s it. It, I mean, unless you got in touch with me I wouldn’t have known, think any more about it, to be honest. It was something in the past I’ve forgotten all about.
And if somebody came to you who’s about to go through the screening process from the very start, what would you tell them about it?
I would advise them to carry on with it and have it done. And I would just tell them what they do, as far as I was concerned and try to put their minds at rest because I’m sure that some people do worry more than what I probably would. And, you know, just try and put their minds straight really.
OK.
I mean, I’d advise anybody to follow up on these things because, as I say, I think they should, all these things do good I think.
And what do you think are the most positive things that have come out of this experience for you?
Well I suppose in a way the way I think about life makes me think that there’s things that people worry about and I don’t, I suppose. And it’s just, I don’t really know to be, in a way, that’s the way I look at it. I think some people are forced into worrying when sometimes it’s not needed. So I try to look at it that if I’ve been told everything’s, nothing to bother you, you just take their word for it and just carry on as normal.
And have there been any negative things have come out of it for you?
Nothing at all as far I can think.
Last reviewed August 2016.
Last updated August 2016.
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