Screening for unrecognised heart valve disease

Getting results of heart valve disease screening

People who take part in screening are told on the day whether or not there is anything wrong, and they also get a letter later on with more detail. Most people will be reassured that they do not have any heart valve problems.
Carolyn and Susie were both expecting normal results because they have never had any symptoms which might suggest a heart problem. However, the heart valve screening programme is designed to pick up people before they develop symptoms. Some people who thought they were fit and healthy were surprised to discover they had a valve problem.
Occasionally people said they had some reason to think something might be wrong, so their results did not come as such a surprise.
As several people pointed out, mild heart valve disease is common amongst older people. If a heart valve disease is discovered during screening, it is most likely to be something minor which does not need further treatment and which people do not need to worry about.
Even so, people sometimes felt a bit anxious. Hugh already has a condition called Barrett’s Oesophagus, which gives him an increased risk of cancer of the oesophagus (gullet), and he says ‘that started making me think, “Oh, you’re quite vulnerable”.’ Then when he found out he had a heart valve problem he couldn’t help but worry about it, especially as there is a family history of heart problems.
Ursula was told on the day it was not serious, but this was not enough to reassure her.
Although Ursula remembered getting the results confirmed in a letter, it did not give her the extra information she would have liked. People were generally pleased to get the letter – for example Peg said ‘That was quite good. It explained a lot of things.’ But there were mixed views about how easy it was to understand and whether more (or different) information would have been helpful.
Cathy has memory loss, so having something written to take away with her would have been particularly helpful. For her, even remembering the name of the condition so she could look it up on the internet was difficult. Although she and Fraser did not at first remember getting the results letter, they found they had kept it in a file, but it still did not mean a great deal to them when they read it again. Fraser noted that it said Cathy had ‘mild aortic regurgitation, whatever that is’, and his own results said ‘normal echo study, no valvular pathology, normal right heart, no pericardial effusion, normal study.’ But as Fraser added, ‘That’s an issue with any specialism, whether it’s people mending your car or people providing medical treatment. And because it’s so specialised there are a lot of abbreviations around. And I’m afraid me being me, I tend to sort of make a note of them and then come back and immediately look on the Internet….. And because the medical profession is always under pressure, you know, is there always enough time to explain to people exactly what they mean when they talk about this or that in terms of initials and acronyms?’
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 a few months before they got another appointment at which they could find out more (see ‘Attending follow up appointments’). This has since been resolved but at the time probably added to some people’s uncertainty.

As a result of this early feedback from participants, 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. A results letter is also sent to the patients’s GP with any recommendations or advice as necessary.
 

Last reviewed August 2016.
Last updated August 2016.

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