Information and questions about taking part in heart valve disease screening

People who are invited to take part in the heart valve screening study are sent an information pack with the invitation letter. Nearly everyone we talked to felt this was very simple, clear and easy to understand.

Norman felt the researchers communicated well with him at all stages, and it was clear he could…

Age at interview 77

Gender Male

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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.

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Fraser thought the information was clear about what was involved and what would happen if any…

Age at interview 68

Gender Male

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And the information that you were sent before the screening programme to ask if you wanted to take part, did that say anything about the kind of conditions that they were looking for?

Fraser’ I don’t think so. I think that was just very simple and straightforward. I mean, at that, at that time, if I remember correctly, what it said was, We’re going to study the, how effective are the various treatment pathways for valvular heart disease. And we want to identify a group of people, characterise them, and then follow them over a period of years And that’s simple and straightforward. There’s no mystique there. it’s not until you get to the second stage that you start to get out the medical details.

It says what’s the purpose of the study, and it describes visit 1 and what are the possible results from visit 1. And it says that the results from visit 1 will be assessed by experts and then there will be two possible outcomes. One is a suspected valvular problem. About 1 in 10 people will be asked for a follow-up and will, and the patient will be notified immediately of the results. And those people would be invited to a second visit. But 9 out of 10 people would be diagnosed as no valvular problem and there would be no immediate follow-up. So it’s, it’s all here.

But it doesn’t go into, you know, mild aortic regurgitation or?

Cathy’ No, or what it is, no, or how you would know whether you had it.

Fraser’ No.

Cathy’ Or whether it was just wind.

Fraser’ But there is a description of what would happen on the second visit.

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A few people said they did not read or remember the letter and information leaflet in great detail. For example, George said, ‘To be quite honest I skipped through them and I only took the gist of it out.I could understand what was going on.’ Norman commented, ‘People stop reading after the first page’. Carolyn said, ‘Whatever I read, I think if it doesn’t affect me directly I just dismiss that. I don’t store that away somewhere. It’s only if it’s of a personal interest that I tend to absorb information.’
Sometimes what people remembered from the leaflet was different when they got it out and read it again during the interview. This prompted an interesting discussion with Norman, who was still waiting for a follow up appointment after being told he had a heart valve problem. (See also ‘Attending follow up appointments‘).

Norman did not remember the leaflet saying much about what would happen if a heart valve problem…

Age at interview 77

Gender Male

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There’s a reference to whether early detection may improve the care pathways. But the thing that I need to ask a little more about is, The secondary purpose is to study what happens to any abnormality of the heart valves over the long term And my concern is that [laughs] I don’t want to find out what happens over the long term. I want to feel confident that if anything is found it will be dealt, with rather than studied [laughs]. And I’m quite sure that is the case, that if anything untoward is found I will be channelled into some sort of treatment. But I would feel a little, a little nervous if the exercise was, Having seen this, let’s see how bad it gets, [laughs] before he pops off the perch

I mean I suppose you, I suppose you could argue that pretty early on in a three- or four-page document it might be worth stating very simply, The benefit to you of taking part will be that if we find anything untoward we will be able to direct you in the right way I mean, if that’s stated simply up front, that’s a great encouragement. The fact that it’s on, you know, fairly well down on page 2 means I didn’t take it in.

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Like Fraser, Carolyn did not remember being told much about heart valve disease in the information leaflet, but that was not an issue for her.

Carolyn was not expecting anything to be wrong so she felt no need to learn more about heart…

Age at interview 69

Gender Female

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Initially I was quite pleased to take part, because I do have a family history of heart disease, so I thought it would be reassuring to have a check-up. I’ve never had any indication that I needed a check-up, but I just thought it was a very good idea to take part.

And can you remember what the letter said, what you had to do?

Not really, [laughter] no.

So you rang the Health Centre?

Presumably, yes, to make an appointment, and went accordingly.

And did they give you much information about heart valve disease?

No. I don’t remember it, anyway.

Right. Had you ever come across heart valve disease before?

No. No, my only experiences are of relatives dying of a heart attack or heart failure. My own history is that I’ve had high blood pressure that was diagnosed in the mid eighties and I’ve been taking tablets ever since, but never had any adverse effects or complications that needed any further investigation.

Would you have liked more information about what heart valve disease is and what the risks are with it?

It didn’t really bother me. I just thought, you know, that if it cropped up it would be dealt with, and I don’t anticipate problems [laughter]. I just take everything day by day.

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Clearly people whose results are normal may feel differently to those who are told something is wrong. Carolyn felt there can sometimes be too much information, though not in this particular case.

You want enough information but not too much, which can be confusing. The information from the…

Age at interview 69

Gender Female

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And you were saying a bit earlier before we had the camera rolling about kind of the change in attitude amongst doctors now about what they tell you.

Yes, yes.

Perhaps you could just say a bit about that?

Sometimes I think they probably give you too much information, and you get confused, because you think, Did they say that, or did they say something else [Laughter] it’s, you know, you want enough but not too much.

So we’ve moved from a situation where they withheld information–

Yes.

–to one where……

You’re given unnecessary amounts, sometimes.

Did you feel that with the heart valve screening?

No, no, I don’t think so.

No, so it was about right, the information you had? Yes, okay. Is there anything else that you would want to get across from your experience, or anything you’d want to compliment them on or?

No, I’ve no criticism. I think everything went perfectly pleasantly. I wasn’t upset or annoyed or felt something was being kept from me, everything seemed fine. But when you say, I mean as you say heart valve, what is heart valve disease? Is it the same as clogging of an artery, or is it a weak valve or what? A hole in a valve?

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Susie did not remember the leaflet saying anything about the fact that she’d have to strip to the waist for the heart screening. This was something she found a bit worrying and embarrassing, and it might have been useful to mention it in the leaflet, but she thought ‘the majority of people perhaps wouldn’t worry about it’. (See ‘The screening appointment – having the heart scan‘).
Several people commented positively on the fact that they were able to ask any remaining questions they had face-face when they attended the screening appointment. But a few people had unanswered questions, including a worry about how their screening results might affect holiday or life insurance.

If you find out you have a heart valve problem, Brian wonders if this will affect your chances of…

Age at interview 71

Gender Male

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As you try to get holiday insurance, especially once you’re over seventy, you have to give all your medical history and that, and whether one of these scans and surveys would jeopardise getting holiday insurance is a problem that you have to think about, because at the moment, I mean obviously you’re going have to pay, you get to seventy you pay more anyway, but a lot of these insurance companies, as soon as you say you’ve got a certain problem they just say, Oh, no. We can’t insure you So you’re stuck.

And you’re not sure whether this is something you should tell them about or not?

That’s true, yeah, because I mean I like to tell the truth on anything that I’m dealing with. I mean, I won’t tell a lie to anybody, and do you have to declare it or don’t you declare it? Even if it’s something that is, it’s not bothering you in any way, but should you tell them that, you know, that you’ve had this done and been told?

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In response to early interviews in this study, the research team running the heart valve screening project produced a short leaflet for people with mild heart valve disease. This includes the advice that, ‘You would only need to inform an insurance company if you are under hospital follow up by a consultant or have significant symptoms related to your valve disease.’

See ‘The screening appointment – having the heart scan‘, ‘Getting results‘ and ‘Attending follow up appointments‘ for more comments on information from the study.