Screening for unrecognised heart valve disease

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.
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).
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.
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.
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-to-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.
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. 

Last reviewed August 2016.

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