Being invited for heart valve disease screening

Screening for unrecognised heart valve disease is a new development in health care, which is currently only available in a few places in the UK as part of a research study. All the people we talked to were taking part in this research study, which is testing how practical it is to screen large numbers of the population, how many people are found to have the condition, and how mild or severe it is. Those who are then found to have the condition will be followed up. This is called a ‘cohort study’. (See also ‘What is heart valve disease and why screening for it may help‘). Fraser and Cathy both took part (Fraser chose not to be on video).

Fraser and Cathy got a letter saying the research study needed a group of people to be screened…

Age at interview 68

Gender Male

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Fraser’ We simply got a letter from via the surgery saying, We are the [name] Heart Valve Study and we want to recruit a group of people – I think it was 3,500, something like that – just to follow them through and look at treatments for valvular heart disease. And would you like to volunteer And I think it was that we fell into the right age group. So we made an appointment and went down to the surgery.

Cathy’ Yes, my mother died at the age of 58 of a heart attack with complications. She had cancer as well, but it was actually the heart attack that took her off. So I sort of felt rather as if I’d be very happy to join in this study.

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Norman recalls getting an information pack with the letter, explaining that some people who were…

Age at interview 77

Gender Male

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Let’s go through the actual process and starting with how you were invited and what information you were given. What happened? Your GP asked you?

Yes. And I said, Yes, I’d be happy to take part in the study And then I had an information pack about what the study was going to be, that it was a two-stage process, and that one in ten people, having had the first scan, if they’d been shown to have a valve problem, would be invited back for a further scan a few months later. And I’m due to go back in January.

And was it by letter or face to face? How were you invited?

Now hold on. I suppose, yes – the first time I received a letter with an information pack, which I could have completed a form and returned, but in fact I rang them up and said I was happy to take part. And then I went down to the, the local health centre for the first chat.

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By definition people who have unrecognised heart valve disease do not know there is anything wrong, and so the researchers found people to take part by asking GPs to send an invitation letter to everyone in the right age group (over 65). Most people we talked to said they were happy to get the letter and pleased to respond. (However, we were not able to interview anyone who decided not to take part – see also ‘Reasons for taking part‘).

The letter inviting her for screening came out of the blue, but Susie was on the phone straight…

Age at interview 74

Gender Female

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When I first got the letter about the heart valve survey, I was very pleased to think that people were taking an interest in us, and I got on the phone straight away. I made the appointment, and within a week I’d gone for the test and luckily enough I passed with flying colours. They were very pleased, you know, with the outcome, and I also was, and I know by doing this it helps other people and they can think of other ways, you know, to help heart problems.

And did it come via your GP?

It came through the post. I think it was the hospital, yes. I think it was the hospital, if I can remember rightly, and you know, it was, it came out of the blue, actually, you know, because I wasn’t expecting anything. I have taken part in surveys before, but for a different cause, of course, you know, and I really think that it’s a brilliant idea, I do.

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In a few cases one person in the household was sent the letter but then somebody else turned out to be in the right age group too and was able to get involved.

Pamela explains that her husband was invited to take part but when she rang the surgery to fix an…

Age at interview 78

Gender Male

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When we got the original letter we discussed it and we thought it was a really good idea, not only for us but for other people. But it was, the letter was originally sent just to my husband, because I think probably because he was 80. Well, then I rang the Health Centre to make an appointment for him to go and see the person to do the research, and the lady on the phone said to me, Is there anyone in the house that’s over 65 as well and I said, Well yes, I am so she said, Do you want to come as well And I thought Oh brilliant! So I may as well go as well So that’s how it started and we had appointments one after the other on, you know, one morning, the day before it snowed, and that was fine.

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Roy got a letter about the study. His wife Peg rang to fix an appointment and was asked if anyone…

Age at interview 71

Gender Male

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Well, we first heard about it when, it was Roy who had the letter come through and we made the appointment. And I’d been to the doctor and she said, she examined me sort of thing for another something I went for, and she said that I had a heart murmur and that she hadn’t heard it before. And she would make an appointment for me to have an echo sounding. Then when the letter came through for Roy and I rang up the appointment, for the appointment, they asked me at the surgery, was there anyone else in the house over sixty-five? And I said, Well, yes, I am So they said, Well, would you like to come along And I said that I’d had this appointment with the doctor and that she was going to send me for an echo sounding. She said, Well, this is entirely different. Would you like to come along So I said, Yes So we both went along.

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Roy said he probably would not have gone for screening left to himself, as he does not think about his health much. (See ‘Feelings about screening and general health‘). But Peg said, ‘I coerced him into going because we’re both getting on’. Although nearly everyone we talked to responded quickly to the letter, one person was a bit more anxious about it.

George ignored the first letter from his surgery because he was worried about where it might lead…

Age at interview 86

Gender Male

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As I say it started off with actually two letters from the surgery. The first one I ignored, mainly because I am, as now, always apprehensive as to where it leads to. The second time I felt I ought to take part since obviously my doctors, in a sense, recommended it. So, there you are. Then I got an invitation to attend the surgery, my own surgery.

I was told there was nothing radically wrong with my heart except the blood was a little slow in moving into the heart. I don’t know if that is significant in any way or not. And that’s about it to date.

OK, and you said there that you got two letters and the first one you ignored because you feel apprehensive about these kind of things? Can you tell me a little bit more about that?

Well, I suppose… I was in the Forces during the War. I volunteered to go into the Forces. And once you’re there, you volunteered once, you’re reluctant to volunteer again. it’s something that I suppose is bred into you, in a sense. You never willingly volunteered. Once you’re in the Forces, you never volunteered again, so to speak. For example, if they wanted a job done by you personally or a group of men, the sergeant used to come down and call for volunteers. Nobody volunteered. It was, You, you, you, and you, get on and do it And I was brought up in that sort of atmosphere. So I suppose that was originally my reluctance. Does that make sense?

Were you worried about what might be found from it? Or was it just that you…?

Yes, probably you are a bit worried. I always have been. For example, all my life I have said I would prefer to go to a dentist than to a doctor. My reasoning being if you go to the dentist, he will tell you that your teeth are rotten, and you got to pull out. And you’ve got to endure pain for perhaps two minutes while the tooth is pulled out. The doctor, if you’re not certain what’s wrong with you, he can tell you, he can, in fact, give you the death penalty if you like – say, you know, You’re such and such and you’ve got such and suc, and incurabl. So maybe that doesn’t make sense, but that’s the way I feel.

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George explains that he was frightened about what might be found, even though in his case the results were normal. 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.
Anne said her husband did not want to take part, but this was partly because he already has heart tests for a different condition once a year, so he feels he is well monitored. (See also ‘Reasons for taking part‘).
Because the study was working with specific GP practices, people often knew of neighbours who had been invited, including some who chose to take part and some who didn’t. Lech discovered his sister had got the letter too.

Lech had already had a heart attack, so at first he thought the invitation was because of that…

Age at interview 78

Gender Male

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So when you got the letter from your GP—

Yes.

— asking you to take part in this screening programme, what were your thoughts when you got the letter?

The first moment, first moment I say, I know I have a little bit problem with my heart But second, after, I even talked to my sister, because she have also the same letter from the GP. They say anyhow they will check properly and actually, as a matter of fact, they did, because they find that I have now leakage valve, you know, what I never knew this before. That was the first time I knew that. She told me, it’s nothing serious. A lot of older people have this leakage of heart Anyhow, I wasn’t worried and I know some, everybody has to die one day [laughs]. Sometime from this, sometime from something else, you know? That is life.

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Lech talked to his sister about the research and quickly decided to take part. Others said they talked to a partner, or made the decision alone. Anne commented, ‘I made my own mind up. I did talk to my husband about it and he said, ‘That’s a good thing. Carry on.’ He said, ‘It’s up to you’.’