Screening for unrecognised heart valve disease

Reasons for taking part in heart valve disease screening

Anyone who is asked to take part in a medical research study can say no and this will not affect their care in any way. However, everyone we talked to had decided to take part in the heart valve disease screening study, and we asked them why they chose to get involved. It was common for people to mention a mixture of reasons, including wanting to help medical science and other people, as well as their own personal health benefit.
Like Norman, in some cases people were particularly interested because either they or members of their family had a history of various heart conditions.
The idea of getting one’s heart checked was generally welcome. People said either they would feel reassured if nothing was found, or if something was found they would rather know about it than not know. Some felt reassured just because the NHS was ‘taking an interest in me’.
Sometimes people assumed that there would be treatment available, though in fact mild heart valve disease may need no treatment. But people still felt because they were in the research study they would be monitored over the next five years, and if their condition got worse it would be picked up quickly and dealt with.
Alongside personal health, the idea of helping advance medical knowledge was a common theme.
Sometimes there was a sense of gratitude for care from the NHS or gratitude for what past generations of research volunteers had done. This could make people feel they had an obligation to take part – even if, like George, they were not very keen on volunteering.
Just under half of the people invited for screening so far have agreed to take part, and just over half decided not to. 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. Other reasons may include anxiety about the procedures involved – with heart valve screening the scan is painless and non-invasive, but it does involve undressing to the waist, which may put some people off. (See comments in ‘The screening appointment – having the heart scan). We also know that some people may not take part in screening because it is difficult to find the time or because access is difficult. This is one reason why the research team wanted to hold the first appointment in local health centres, but even so some people have told the research team they did not want to travel to and from appointments. Other reasons people have given to the research team for declining to take part also include having too many other things wrong, or being too old.

Last reviewed August 2016.

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