Screening for unrecognised heart valve disease

Messages to other patients and to research staff

We know from other research that people sometimes decide not to take part in screening because it makes them anxious or afraid they may find out something they would rather not know. However, all the people we talked to had taken part in the heart valve screening research study, so they are more likely to have more positive feelings about screening.
We asked people what their messages would be for anyone else invited to take part in something similar in future. On the basis of their experience people generally felt it was a good thing that they would recommend to others, both for their own health benefit and because it could help future generations of patients. Cathy described this as a ‘no-lose situation’ and Elizabeth commented' ‘All I can say is “Go, and regardless of the outcome go and be screened”, because it is important that people are screened and it’s a good thing that’s happening with the screening.’ (See also ‘Reasons for taking part’ and ‘Feelings about screening). We also asked whether there was anything they would want to say to the research staff. There were generally very positive comments about individual members of staff, their manner and skill. Rene could not think of anything that could be improved, and said of the staff, ‘I couldn’t find any fault at all. And I just feel as if I’ve made another friend. If you’ve got the chance, definitely go.’
Others also felt it was important other patients should know they could change their mind or say no. As Brian commented, ‘I had the chance to say that I didn’t want to take part, I was told that I could do that and it would just be all forgotten.’ George also emphasised that it was an individual decision.
Anthony emphasised the benefits for medical research.
Anthony’s only worry was whether it was good use of money to spend it on him when there might be people who needed it more. Chris also felt it was important that it should not take up too much money.
He wondered at what point they would feel they had enough information and could stop screening more people.
A few concerns about needing more information after a diagnosis and a clearer timetable for follow up were mentioned. (See also ‘Getting results’ and ‘Attending follow up appointments).

These concerns were fed back to the research team. As a result, 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 appears first. A results letter is also sent to the patients’s GP with any recommendations or advice as necessary.

Gowns are also provided for use by patients during the echo scan.

Last reviewed August 2016.
Last updated August 2016.


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