Screening for unrecognised heart valve disease
Messages to other patients and to research staff
We know from other research that people sometimes decide not to take part in screening because it makes them anxious or afraid they may find out something they would rather not know. However, all the people we talked to had taken part in the heart valve screening research study, so they are more likely to have more positive feelings about screening.
We asked people what their messages would be for anyone else invited to take part in something similar in future. On the basis of their experience people generally felt it was a good thing that they would recommend to others, both for their own health benefit and because it could help future generations of patients. Cathy described this as a ‘no-lose situation’ and Elizabeth commented' ‘All I can say is “Go, and regardless of the outcome go and be screened”, because it is important that people are screened and it’s a good thing that’s happening with the screening.’ (See also ‘Reasons for taking part’ and ‘Feelings about screening’). We also asked whether there was anything they would want to say to the research staff. There were generally very positive comments about individual members of staff, their manner and skill. Rene could not think of anything that could be improved, and said of the staff, ‘I couldn’t find any fault at all. And I just feel as if I’ve made another friend. If you’ve got the chance, definitely go.’
If anyone else is invited to take part, Susie's advice is to 'go for it'. It may help you as well...
If anyone else is invited to take part, Susie's advice is to 'go for it'. It may help you as well...
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We ask people just to think about what their messages would be for anybody else who’s invited to take part in screening. Have you got any messages?
I’d say go for it. I really would, you know, there’s nothing to it. You’re doing good for yourself as well as others, and just, you know, if you get the chance, just go for it. That’s how I look at it.
And is there anything you’d want to say to any of the staff who are running the programme, anything that they could do better or anything that you thought was particularly good that they could do more of, or?
I don’t think there’s anything better they could do. I just think they’ve done a brilliant job, you know, by even starting this, this experiment, you know. And I think there’s nothing more, you know, that they can do that’s any better and I thank them all for what they’re doing.
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?”
Norman says it's painless taking part and may help you, and you can always drop out if you change...
Norman says it's painless taking part and may help you, and you can always drop out if you change...
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At the moment, if somebody else got this invitation through the post, what would you say to them?
Well, I would say if you’re invited to be part of a study, have a go. It’s painless, and you may learn something about yourself which is important - on the basis that if you have any problems, the sooner they get sorted out the better. So I would highly recommend it.
And is there anything that you’d want to say to any of the health professionals who’ve been involved either at the screening clinic or your GP about the way it’s all been handled? I mean that can be, you know, things that you think were done well as well as things that you think could be improved.
No, I think all down the line it’s, I think it’s very well done. There seems to be a great deal of trouble taken over keeping you informed, communicating, letting you know what the stages are, letting you know that you can drop out at any time. No, I think it’s been very well thought out.
Others also felt it was important other patients should know they could change their mind or say no. As Brian commented, ‘I had the chance to say that I didn’t want to take part, I was told that I could do that and it would just be all forgotten.’ George also emphasised that it was an individual decision.
Anthony emphasised the benefits for medical research.
The experience was entirely positive for Anthony and Pam, and he'd encourage anyone else to take...
The experience was entirely positive for Anthony and Pam, and he'd encourage anyone else to take...
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And how do you feel about your whole experience now from going to the first appointment and going to the follow up appointment?
I’m very happy about it. Yeah, I think it’s a good thing to do. Because, you know, you don’t learn more unless you can do this sort of thing really. And it’s only by doing it that you then, the only thing I would think about it is this are you sort of wasting your time with me with [laughs] when you know, there might be other people around that need it more sort of thing. But I mean, I’m quite happy about that. I mean, it’s yeah.
And what do you think about the screening process itself now? Do you think it’s worthwhile or would you recommend other people should go for it?
Yes, definitely. Yes, I would definitely think that, it’s a thing that other people ought to do [sighs]. Whether you’d say everybody ought to do it, I don’t know but you know, there’s, I would think it’s one of those things that ought to be done, as I say. Unless you do research you can’t find cures for things, can you? And that’s, it’s a simple as that really. And I’m quite happy to take part in it. No, no problems from my point of view. And then if Pam was here she’s say exactly the same thing. She was, we, we were both more than happy. In fact, when I got the appointment to go for the [research project], she said, “Oh, I wonder if I could do that.” And, you know, that she, it, we both thought it was a good thing to do.
Anthony’s only worry was whether it was good use of money to spend it on him when there might be people who needed it more. Chris also felt it was important that it should not take up too much money.
He wondered at what point they would feel they had enough information and could stop screening more people.
A few concerns about needing more information after a diagnosis and a clearer timetable for follow up were mentioned. (See also ‘Getting results’ and ‘Attending follow up appointments’).
Ursula admires researchers for their dedication, and encourages other patients to give them all...
Ursula admires researchers for their dedication, and encourages other patients to give them all...
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If you were giving a message to somebody else who was asked to join this heart valve screening program, what would you say to them? If they got a letter …
Oh, by all means go ahead. Oh, get it. If it’s offered, then why not? It’s bound to be beneficial, if only to put your mind at rest, if there’s nothing wrong. Can’t do any harm [laughs].
And what would you like to say to the sort of, the doctors and nurses running the programme, from your experience? What would your messages be for them?
I admire people like that. It takes something to do medical work in the first place, in my opinion. Not everybody could do it. And if they are interested, they’re usually dedicated people. And I think one should give them all the help one can. It’s bound to help somebody. I mean, there are people prepared to put themselves out and do things like this for other people. Well, in this present day and age, there’s not many people like that now, is there? [Laughs].
It is true that it gets harder to find …
Yes.
...volunteers for research.
Yes, volunteers, dedicated people, genuine people, not just who do it for the money.
I' Mm, yeah.
R' I think that’s the trouble, we’re too mercenary these days. Money means everything - but it doesn’t.
No.
Absolutely not.
And is there anything you’d want to say to them to, sort of things they could do to improve the experience? I mean, you know, summarising your views about the information and so on.
Well I think, be open with the people, put their mind at rest. If there’s anything, tell them that from the start. I know some people are different, they cannot take. But I’m sure whoever is in charge of this project will know what sort of person they’re dealing with, if the person is too anxious and cannot take the truth or, ask certain questions to find out what their views are before, if it’s bad news.
So to try to tailor the information you give, the amount and the detail.
Precisely, yes.
But in your case, you wanted more really?
I want to know everything [laughs].
Lech couldn't understand all the figures and abbreviations in the results letter. He could have...
Lech couldn't understand all the figures and abbreviations in the results letter. He could have...
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Is there anything you’d like to suggest to them about how that letter could be improved?
Improve only this, that we can understand, you know, what is written there because if that is written LVOT diam 2.1 CM, I don’t know what that means, and all this.
But anyhow, as I say, if somebody wants to know we’ll try to find. I didn’t go even to my GP to ask this. I just asked my niece’s son and he told me everything he knows about it.
So the only thing really would be the information that comes.
Yeah, the - I am waiting, you know. I am not really in a hurry actually. She say she will try to make appointment for me. I know that hospitals these days are very, very busy.
And the written information that you get. That could be improved a bit.
This can be, actually, because at least a few lines to say - not this letter sent, numbers and this, because this is black magic for me and, but still everybody who knows, wants to know, will go to, I could go to GP and say, “Can you tell me what is this?” Why to bother him if somebody else can tell me? He is busy enough.
There was lots of detailed information in the results letter but it was not clear to Norman what...
There was lots of detailed information in the results letter but it was not clear to Norman what...
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But I must say looking at the details that I got, I mean [laughs] it’s very, very detailed. [Looking at letter] And to be perfectly honest I haven’t the remotest idea what the numbers mean.
Do you think it might have been helpful to have a, a more detailed explanation of what --
Not more detailed [laughs].
No [laughs].
No, I mean, no, there’s no shortage of detail here.
But it’s the explanation that’s lacking. What do these mean?
Yes, I mean a set of numbers occupying that much of a page to a layman means nothing. But the findings are summarised. So I suppose to be fair, this simply backs up some very simple statements. Left atrium, “The left atrium is mildly dilated.” Well, that’s a statement. I don’t know whether that’s good or bad. Presumably one shouldn’t have too much dilation, otherwise nothing gets through [laughs]. But, “The aortic valve blah, blah, blah appears structurally normal.” Yes, I mean there’s some information here which I suppose if I got onto Google I might be able to find out more about what it meant. So I’m not short of information. And there is a conclusion, “The EF”, whatever that is, “is at the lower end of normal range.” That sounds promising [laughs].
Does that make you think maybe something, some sort of paragraph to help you interpret that would have been helpful?
I think so. I mean, the findings are stated in some detail. There is a conclusion. But I guess you’re right. I think… I think the difficulty must be that if you simplify something or oversimplify it, you can either - you can mislead. I mean this is a - for those in the know - this is a very precise document. For the layman, it’s not particularly helpful. But I suppose the thing is it, it’s much better to be talking with somebody than to have a letter. If you have a letter saying, “We are very concerned about this condition, blah, blah, blah” then, you know, you’re likely to worry and you immediately want to talk with somebody. So I suppose there is a limit to how much, how much simpler you could offer a conclusion.
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...
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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.
Taking part was reassuring, but Hugh still worries about what it means to live with two leaking...
Taking part was reassuring, but Hugh still worries about what it means to live with two leaking...
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And if someone else came to you and said, “I’ve been invited to take part in this screening and you’ve done it already. What would your advice be, or how would you describe it?” What would you tell them?
I would so just go for it and I’ve found it so easy, people are friendly. And I found it reassuring really. And the more people that go into it the more you’ll like to think that it will be enlightened up to more people and stuff like, you know.
And I suppose I would like to know, deep down I’d maybe like to know how long is acceptable to have a, a leaking valve, or two leaking valves [laughs] I suppose that would be more reassuring really.
But then I suppose they can only do that from numbers.
The more they know about it the more they will be able to inform you …
Yeah to …
about it?
...inform and that like, yeah.
And you don’t, I don’t know how long I’ve been living with it.
These concerns were fed back to the research team. As a result, changes have been made: firstly, the research team have developed a written leaflet to give people on the day if they are told they have mild heart valve disease, explaining more about the condition and reassuring them that they do not need to worry. The patient letters that are sent out to people to confirm their results have been rewritten with an easy-to-read lay summary appears first. A results letter is also sent to the patients’s GP with any recommendations or advice as necessary.
Gowns are also provided for use by patients during the echo scan.
Last reviewed August 2016.
Last updated August 2016.
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