The scan at the first appointment is looking for previously unrecognised heart valve disease. Anyone who is suspected to have a heart valve problem following screening is invited for a follow up hospital appointment for a more detailed scan, an ECG (echocardiogram) and other tests. They may be invited back for further monitoring in future, depending on what is found at the second scan. When the study started, the researchers expected to follow up about 10% (1 in 10) of the people originally invited for screening. In fact they have found about 51% of the people screened have some form of heart valve disease. This is interesting new research evidence. But nearly everyone will be told their heart valve disease is very mild and needs no further action. In total only about 6% have been found to have moderate to severe disease being clinically significant and requiring further intervention or monitoring.
Update 2016
The study has now completed recruitment at just over 4000 patients (over 65 years of age) recruited from 7 participating GP surgeries in Oxfordshire. Most participants found the scanning process acceptable, without causing undue anxiety, and the vast majority of participants (more than 95%) said they would have echo screening again.
The study team have analysed the data from the first 2500 patients recruited and recently had these results published in the European Heart Journal, June 2016. doi:10.1093/eurheartj/ehw229
The data showed that newly diagnosed (predominantly mild and unlikely to ever cause any harm) VHD was found in 51% of participants, of which 6.4 % was found to be moderate/ severe, being clinically significant and requiring further intervention or monitoring. Previously undiagnosed VHD was found to be more common in lower socioeconomic groups, and affects 1 in 2 of the elderly population, prevalence increases with age.
Phase two of the study will be commencing in the Autumn of 2016, conducting the 5 year follow up visits for those participants who have previously taken part in the study. Visits will be conducted at GP surgeries as before, and patients will be invited to attend for their follow up echo (heart scan). This visit will be similar to the first visit, an information sheet will be sent to all patients with their invite explaining the visit and what is involved in more detail.
At his follow up appointment Brian was told he might have a problem with two valves, rather than...
At his follow up appointment Brian was told he might have a problem with two valves, rather than...
Age at interview: 71
Sex: Male
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Well, I had a, they put all these things on me again which they did on the first one, but I think it was a more advanced one that they say it goes deeper, probes deeper than what the first one would. And they did say that there, there might have been a small one on the second valve. But it wasn’t, it wasn’t a problem or anything. I said, well at the time I said I thought it was only the, the one valve. But they said they thought there was a small one on the second one. But they say none of them was a problem so I just accepted what they say and that was it.
So you went along thinking that you…
Yeah.
…had one leaky valve…
And they told me I might have had two.
But as I say, I only had one as far as the first screening said. So...
And did they tell you this was a serious problem or did they think it wasn’t something you should be concerned about?
They said it was nothing to be concerned about. That was the words they said. “There’s nothing to be concerned about.” So...
And did they give you any treatment for it or anything like that?
Nothing at all.
And did they give you any information about it?
Just, only that it was not a problem and that was, you know, I accepted what they say, so I didn’t get any deeper into it really.
And so you, you weren’t concerned at all at the thought of something more having been discovered?
Not really, no. I mean, obviously if it had, if they had have said there was something more and something had to be done then I would have to think about it seriously more then. But they said there’s no problem with it, so that was what I took for gospel, you know [laughs].
Many of the interviews took place when the screening research study was in its very early stages. At this point arrangements for follow up appointments were still being put in place, so people with a diagnosis had to wait some months for their appointment. This has since been resolved and follow up appointments now happen soon after screening. (For example, Rene was interviewed later in the project after both appointments, and said it had all been very quick). At the time it caused a few concerns, even though people had been assured their condition was not serious. This included not being sure when the appointment would be, what the diagnosis really meant, and whether there was anything they should be doing in the meantime. (See also ‘Getting results’). The research team has dealt with these concerns by producing a leaflet about mild valve disease which people can take away with them after the first appointment.
Cathy and Fraser were not sure when her follow up appointment would be. It would have helped to...
Cathy and Fraser were not sure when her follow up appointment would be. It would have helped to...
Age at interview: 68
Sex: Male
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Cathy' I think if there were a pamphlet or a booklet or something that I could take home and look at, that would be helpful. But the person-to-person parts of it were absolutely fine. No problems there at all. Very pleasant. It wasn’t, it was not in any way an unpleasant action, activity.
Fraser' I’d second that. I think the, the process itself was fine. I, I wouldn’t place so much importance on a pamphlet, because if I want to find out about something, being a geeky sort of person, I would go and look on the Internet. And I’m probably one of, becoming one of those people who is a pain to the doctor, because I go in [laughs] and sort of say, you know, “I think it’s this” or, “I think it’s that.”
The one thing that I think would be helpful to us is that having picked up Cathy as a person that they want to follow through, it would be nice to have some kind of feel for the timescale of that. We assume that since we’re now two and a half months or thereabouts downstream that there is no pressing urgency there. But, you know, are we talking about a week, a month, six months, something like that? And actually that knocks on to other experiences that we have, because this is not the only point of medical contact we have with the hospital system. And that is that timescales are firstly very drawn out, and secondly very indefinite. You really don’t know when anything is going to happen at all. And I mean it’s assumed that since you’re retired you actually don’t have anything to do. But that’s not true at all, you know.
Peg was worried about her screening results. She was glad she had another appointment the same...
Peg was worried about her screening results. She was glad she had another appointment the same...
Age at interview: 71
Sex: Male
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And what about you, when you were told the results? How did you feel about that?
Peg' Well, she never went any further, sort of thing, at that point. She just said that she could see the bits and pieces that were, weren’t right and that I would have another appointment and what have you. And I did worry a bit about it, but then again, when I went to the other one later on in the afternoon--
Roy' [laughs]
Peg' - which was done by a doctor, he then went on to explain what would happen. He said, “There’s nothing, it’s nothing to worry about at this point in time.” But they’ll just keep an eye on it and if, at a later date, anything had to be done then he went on to explain what would be done, which I found quite interesting, really.
And what did he tell you might be the options later on?
Peg' Later on, is to have this - I know some people when they’ve got a bad heart they have what they call a stent put in, which is this umbrella thing, isn’t it, which goes in the groin. Well this, he explained to me, would do, they’d do the same thing, going in through the groin but instead of it opening up like an umbrella, sort of thing, it would take the place of the valve and pump for me. But he said that’s a long way away off. So I was quite relieved about that, because I didn’t particularly want to go in again [laughs].
[Laughs] Now most people, I guess, well, virtually everybody probably won’t go straight on to another heart scan later in the afternoon [laughs].
Peg' No! [laughs].
Roy' Well no.
And have that.
Roy' That was just how it worked out, really.
Peg' That’s just how it worked out. And I ummed and ahhed about it, and I did explain to the doctor when I got there at the hospital that what had happened. “Oh, well.” He said, “We’ll see if we come up with the same results.” And of course they did which was - but he, being a doctor, was able to explain, because I mean I don’t know what training the young lady had that took our scans, sort of thing, had, but he then went on to explain what would happen.
Ursula did not remember being told there would be a follow up appointment, perhaps because she...
Ursula did not remember being told there would be a follow up appointment, perhaps because she...
Age at interview: 82
Sex: Female
Age at diagnosis: 81
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Would you have liked to have been given something to take away with you? some information?
I might have been happier had I been told what, how serious it is or how unimportant it is, because to me it seemed, although it was found, but nobody gave me any indication as to what I can or cannot do, avoid any strenuous exercise or work or anything like that. But, as I say, at the moment I’m just waiting to see what happens.
And you’re not sure yet whether they’re going to ask you to go back for another appointment?
No, up till now nobody has bothered, so I’m just wondering. I feel rather, a bit let down.
Can you remember her saying on the day that you went for the screening and giving you the results whether you would be asked for another appointment?
She may have done, I cannot remember. I was a little bit shocked to discover there was something wrong, but having said that, she may have said. I can’t remember.
I did receive a letter from...
From the screening programme?
Yes, from the screening program.
And what did you think about that letter?
Well, there again, it gave me some idea that there was in fact something wrong, but I am no judge of the seriousness of it. As I say, it may not be much, it may not be very serious, but not knowing, this is a bit of a worry.
Could they have done something to make that letter better? I mean, if they’d included a sort of a, a summary of it or something? Would that have helped?
Well they could have assured me, “There’s absolutely nothing to worry,” or given me advice as to what I can or cannot do, should avoid any strenuous exercise, any strenuous work, bending, stair-climbing or whatever, jogging.
Anything that could have an effect on the heart valve.
There was even some uncertainty about whether there would be another appointment at all. Hugh, for example, said in his first interview that he was not expecting a further appointment, while Brian remembered being told that ‘if there was any further they want to look into it, I would get a letter from the local hospital to take part in a deeper scan. So at the moment I’m waiting to see whether that is what I’ll have to do.’ Norman remembered being told there was another appointment to come, but was not sure whether treatment would be offered. (See ‘Information and questions about taking part’).
We interviewed people from these early interviews again after their second appointment; with hindsight memories about the wait had often faded and it was not remembered as a particularly worrying time. Some said they didn’t even think about it, while others remembered what Hugh called a ‘slight worry’ every now and again.
Anthony waited six months for a follow up appointment but didn't worry at all while waiting. He...
Anthony waited six months for a follow up appointment but didn't worry at all while waiting. He...
Age at interview: 78
Sex: Male
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How long did you have to wait between your first appointment for screening and then your follow-up appointment?
Six months.
Six months.
Yes.
And how did you feel during that time?
What the waiting period?
Perfectly all right. I didn’t sort of worry about it or think about it. It didn’t worry me at all. As I think I’ve said before I’m very happy to take part in a research. I worked in a research establishment. I think it’s a good thing to do.
And at your first appointment you were told you had a leaky valve?
Yes.
And had you been given any information about what that might mean at the time?
I hadn’t before I did, before I knew that I got it, I didn’t have any information about it. The lady explained to me a little bit about it and said that it, you know, wasn’t serious and it was quite common for my age group sort of thing. It certainly doesn’t affect me in anything I do. I can still run up and down the path even now if I want to [chuckles]. Not as fast as I could a few years ago, but it, it doesn’t worry me. And I do quite a lot of physical work. I’m quite happy about it.
No, no problem.
And after that appointment were you expecting to be called for a follow up?
Yes. Yes.
They did say that you know, quite possibly would be called for a follow up. I was quite happy about that, that was, that was, that was OK, yes.
OK.
No problem.
Looking back, Cathy wasn't much worried by the wait because she knew the condition was minor, but...
Looking back, Cathy wasn't much worried by the wait because she knew the condition was minor, but...
Age at interview: 68
Sex: Male
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So I guess the first thing is to, is to sort think about that waiting time, and how long you had to wait, and what it was like waiting.
Cathy' It wasn’t a problem at all, because they made it fairly obvious that it was very minor. So it was nothing in particular to worry about. I mean, it’s the wee small hours when things sort of catch up with you a little bit, and I was sort of listening to my own heartbeat and thinking, “Well, come on, you can do better than that.” [Laughs]. But, you know, I mean it’s not a worry because they were very relaxed about telling me. I mean, they treated it beautifully. There was no sort of, “Oh, dear, we had better do...” or fuss, fuss, palaver. Nothing like that. It was totally professional and smooth, and quite reassuring, “You have this little problem.” Okay, other people have other problems. That’s mine.
And can you remember how, how long it was?
Cathy' Not a clue. I can’t tell you that at all, I’m sorry [laughs].
The follow up appointment itself was often described as efficient, quick and easy. Lech and his sister went together, as they had both been told they had a minor valve condition. Originally they were given appointments three hours apart, but Lech was pleased that the staff managed to reorganise the times on the day so they could get home earlier. Getting to the hospital could mean a drive of 10 to 20 miles and finding parking. Norman commented, ‘Frankly it’s always a pain in the neck going into the city and the hospital’s no exception. But usually if you’re patient you can find a slot and so it was fine.’ Anthony and Pamela ‘made a day of it’ and went out for lunch afterwards. Ursula said it was possible to get there by public transport if the timing was right and she could use her bus pass. People who are taking part in a research study will often be given travel expenses, but Brian turned this down. He said, ‘I’m just doing it voluntary and that’s it. I didn’t want paying for any of it.’
The follow up appointment may last up to an hour, and is similar to the first appointment but uses more specialist equipment, which Fraser described as ‘better kit’. Rene said, ‘I like to go to the hospital. I just think it’s so thorough’. Hugh was also pleased to be in a hospital centre.
Hugh doesn't like hospitals but given his family history he feels reassured that he's being...
Hugh doesn't like hospitals but given his family history he feels reassured that he's being...
Age at interview: 68
Sex: Male
Age at diagnosis: 68
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And it was a morning appointment. Two young ladies and there weren’t anybody else, there didn’t seem to be like a waiting room or maybe enough for two people to sit in, one being seen and maybe one waiting like, you know.
And how did you feel about having to go to that hospital?
I’m, I’ve never been a great lover of hospitals even from a youngster. I had to go in when my sister was in hospital for a long time, about nine months. And I had to go more or less every other, or every week to see her. And it just sort of put me off really so, the shorter time I spend in them the better [chuckles].
And your first appointment was at a local health centre.
It was. It was, yeah.
And just how did you feel about those two different locations that you had to go to?
I didn’t mind because it, it was a with having a family with heart problems I was pleased to think that I could be kept a check on. And I found it very interesting looking at the, when they gave me the feedback to show me the actual leaks.
On the screen?
On the screen. And they just on, and then on, when I went to the second appointment they just confirmed, yes they are leaking but you’ve got no problems.
OK.
Really. It, well what they said is, it’s quite normal for a person of your age or fairly normal for somebody of your age to have these leaking valve things.
The follow up appointment was very efficient and similar to the first one. Anthony and Pamela...
The follow up appointment was very efficient and similar to the first one. Anthony and Pamela...
Age at interview: 78
Sex: Male
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The appointment was very much to time. We were, you know, we went in, both Pam and I were I think I went in first and you know, it, it was all very nice, very, it was very good. Same lady that I’d seen before, she was very pleasant and as I said, I’d shown an interest in the equipment before and she was very good. Excellent. Yes. And Pam said afterwards that you know, although she’d had a, a mammogram done before, previous, that she was very good about it, and she knew every, everything was very pleasant and was quite, we both quite enjoyed it actually…
OK.
It wasn’t unpleasant.
And was the hospital a convenient location for you to have to go to?
Yes, yes, it was, it was quite easy to, it was about 20 odd miles I think from here but it’s an easy, very easy journey.
Yes. No trouble.
And how did you feel about your follow up appointment being in a hospital because your first one had been at your local health centre, hadn’t it?
Didn’t make any difference at all. I mean, it, it was just the same. I don’t have anything about going to hospitals. It’s as I say I’m fortunate that I don’t, I haven’t had to go personally very often [laughs] but it’s no, it wasn’t any problem. That was all right, yes. Yeah. We just made a day, I think we went and had lunch afterwards and that was [laughs]…
Made a day of it.
That’s right, yes.
And so what actually happened? You arrived and you were sitting in the waiting room and then you were called in?
Yes.
And then what happened?
I went in she explained again what she was going to do, which was similar to what she’d done before. Did I lie on the couch? I think I laid on a, on a couch. She had the equipment by the side of her and you know, we went from there.
It was all, it was very pleasant actually [laughs] It was quite nice. She, as I say, she was a nice person and it was nice to talk to and we had a bit of chat in between and it was very good.
And how long did it last for?
Anthony' [sighs] Difficult to say. It wasn’t very long. It could have been sort of 20 minutes; it may have been half an hour, sort of thing. But it wasn’t any longer than that. It was only a few minutes, it may have been quarter of an hour but it, time went very quickly.
And then what did she tell you was your condition whenever you’d finished?
She explained that I’d still got this leaky valve and that it hadn’t sort of, I don’t think she said it had changed from when she’d examined me before, it was still the same. And you know, if I hadn’t had any problems in my life up to then with it there was no reason why I should have any problems now. And certainly I haven’t had any problems - sorry I’m a bit superstitious - with it, since and as I say I feel perfectly all right. No, it’s OK. In fact, I was very surprised when she said I’d got a leaky valve because I didn’t think I’d got anything wrong with me at all [laughs].
And so has knowing that made you feel any differently about yourself?
No, not really. No, I’m just the, basically the same. There’s othe
As with the first appointment, there were many positive comments about the friendly attitude of the staff and the way they explained the results.
In most cases, the follow up appointment will simply confirm the diagnosis from the initial screening.
The follow up appointment confirmed the original diagnosis of a mild problem. Norman feels quite...
The follow up appointment confirmed the original diagnosis of a mild problem. Norman feels quite...
Age at interview: 77
Sex: Male
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And can you remember what exactly happened at the appointment?
I can’t remember precisely but I, because I’ve been for other scans for other things and I get one confused with another. But the thing that impresses me is how well organised everything is now. And the appointments are normally very much on time and one’s very well looked after. You’re normally given an explanation of what’s going to happen and the whole thing is very satisfactory.
And were you given another diagnosis at that follow up appointment or did they not find anything new?
I don’t recall anything new.
OK. So you just have one leaky heart valve?
As far as I know…
OK [laughs]... so were you offered any treatment?
No. I think that the condition is regarded as reasonably innocuous and not life threatening, so I’m quite relaxed about it.
OK.
Although I’m glad to be under survey so that if anything does change I might be, be alerted very quickly, which is always a good thing.
OK. And so you didn’t, the fact that you weren’t offered treatment was that sort of reassuring because it meant it wasn’t serious?
Yes. I’m all for lots of people who are keeping a close eye on me.
OK.
On the principle that the sooner something is discovered the more likely you are to have it remedied with a satisfactory outcome.
OK. And were you given any information about your heart valve?
I don’t recall it. No, I’m simply aware from the first time it was mentioned that it is a not unusual condition. And the particular condition I have is not that serious.
OK
I haven’t been aware of any change in that situation.
OK. And do you think there’s any information that you would have liked to have had?
I can’t think of any.
Chris knew he didn't need treatment and thought the follow up appointment was more about...
Chris knew he didn't need treatment and thought the follow up appointment was more about...
Age at interview: 70
Sex: Male
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And did you get the impression, I mean what did you think their reason for following you up was?
Well although it didn’t need treatment, I think it was really just, really to get more information about the condition. And obviously the more information they get the better it is for them, for the people, undertaking the study.
And did they give you a further diagnosis at that stage?
No. Well they said it’s what you’ve been told already is correct, and there’s nothing to worry about. There was no further, I think there was no further evidence was found of any bad condition.
Okay and how did you feel then after that?
Alright. I’m very relaxed about these things.
Occasionally, as in Brian’s case above, something else may be discovered. Ursula was told she had an irregular heartbeat as well as the valve problem.
At her follow up appointment Ursula learnt she had an irregular heartbeat. She wonders how...
At her follow up appointment Ursula learnt she had an irregular heartbeat. She wonders how...
Age at interview: 82
Sex: Female
Age at diagnosis: 81
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And the latest one, it was discovered there was an odd extra heart beat and I think it was something else which seemed to have developed since my initial appointment. So I’m wondering how significant that is.
OK.
It’s not bothering me in any way because I don’t feel ill or anything, I don’t feel any different but I’m just wondering if there’s anything that could tell us about the progress,
And so do you think that the extra heart beat was something you didn’t have...?
I’m wondering if it was there all along…
Yeah.
...if it was, why was it not mentioned or diagnosed except at the last appointment.
And did you get any information about your condition?
Not necessarily, no, not really.
OK.
I was just told what I just said and that was it.
Yeah. And how did you feel about that?
I’m quite happy. As I say, it doesn’t hurt me or it doesn’t cause any problems. So now I’m here telling you all about it. There’s not much to tell because as I say I don’t feel any different. I feel quite happy. I’m quite able to do anything and everything I want. It doesn’t worry me personally, but if there is anything that can be gleaned from this then that will be helpful, if not to me then to somebody else perhaps. It will, may help you in your research.
OK.
Hopefully.
And were you given any treatment for the leaky valve or …
No, not at all.
… the heartbeat?
When I spoke to my doctor he didn’t seem to be unusually bothered by it.
Hmhm. OK. And did you speak to your GP after you had been to all these appointments?
Yes, yes.
Right. And did your GP already know about you having been to the screening?
I told him but I think that he has been informed. He is aware of it.
So I imagine he will keep on being informed.
OK. And has he told you that he’s going to keep an eye on you in the future because of your….
No, he hasn’t. As I say, he doesn’t seem to be unduly worried.
OK. OK. And so the day that you went for your appointment to the hospital, did you find it convenient to get there or …
No trouble at all. I can use the bus pass, I can get there provided the timing is right…
… it doesn’t cost me anything.
In most cases, people will not be called for any further scans for five years. Whilst this could be seen as reassuring that nothing is seriously wrong, Hugh wondered what would happen if the condition got worse.
Hugh wonders how long it would be before his condition needed treatment, if at all, and how that...
Hugh wonders how long it would be before his condition needed treatment, if at all, and how that...
Age at interview: 68
Sex: Male
Age at diagnosis: 68
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I’m, no, I’m sometimes intrigued really to in, ask, you know, how long will it take for them to get that bad where they’ve maybe got to do something about it. Because maybe they left it too long with my friend from Australia because now they’re saying he’s too weak to be operated on. So I just wonder whether there is a, somewhere along the line a cut off point where they might decide to do something, you know.
So with having these follow ups and stuff and hence it keeps the doctors I thought you would, they were doing this survey in all the practices but it was mainly in the, in the health centre where I am. And the feedback goes to the doctors there, doesn’t it? So…
I don’t know how they would whether they would say to or how long it would be before they decided to do anything, or if they decided to do anything at all.
And have they asked you to come back for another follow up?
No they haven’t.
OK. And…
No.
… was it discussed that you might be called back again?
Memory’s a great thing, isn’t it? [laughs].
[Laughs]
I think, I don’t think so. I don’t think they, there was any sort of mention.
The research team advise anyone who has been told they have a valve problem to consult their GP if they start getting any symptoms such as breathlessness on effort, chest pain, dizziness or increased tiredness.
Last reviewed August 2016.
Last updated August 2016.
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