Screening for unrecognised heart valve disease

Attending follow up appointments

The scan at the first appointment is looking for previously unrecognised heart valve disease. Anyone who is suspected to have a heart valve problem following screening is invited for a follow up hospital appointment for a more detailed scan, an ECG (echocardiogram) and other tests. They may be invited back for further monitoring in future, depending on what is found at the second scan. When the study started, the researchers expected to follow up about 10% (1 in 10) of the people originally invited for screening. In fact they have found about 51% of the people screened have some form of heart valve disease. This is interesting new research evidence. But nearly everyone will be told their heart valve disease is very mild and needs no further action. In total only about 6% have been found to have moderate to severe disease being clinically significant and requiring further intervention or monitoring.

Update 2016

The study has now completed recruitment at just over 4000 patients (over 65 years of age) recruited from 7 participating GP surgeries in Oxfordshire. Most participants found the scanning process acceptable, without causing undue anxiety, and the vast majority of participants (more than 95%) said they would have echo screening again.

The study team have analysed the data from the first 2500 patients recruited and recently had these results published in the European Heart Journal, June 2016. doi:10.1093/eurheartj/ehw229

The data showed that newly diagnosed (predominantly mild and unlikely to ever cause any harm) VHD was found in 51% of participants, of which 6.4 % was found to be moderate/ severe, being clinically significant and requiring further intervention or monitoring. Previously undiagnosed VHD was found to be more common in lower socioeconomic groups, and affects 1 in 2 of the elderly population, prevalence increases with age.

Phase two of the study will be commencing in the Autumn of 2016, conducting the 5 year follow up visits for those participants who have previously taken part in the study. Visits will be conducted at GP surgeries as before, and patients will be invited to attend for their follow up echo (heart scan). This visit will be similar to the first visit, an information sheet will be sent to all patients with their invite explaining the visit and what is involved in more detail. 

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 some months for their appointment. This has since been resolved and follow up appointments now happen soon after screening. (For example, Rene was interviewed later in the project after both appointments, and said it had all been very quick). At the time it caused a few concerns, even though people had been assured their condition was not serious. This included not being sure when the appointment would be, what the diagnosis really meant, and whether there was anything they should be doing in the meantime. (See also ‘Getting results’). The research team has dealt with these concerns by producing a leaflet about mild valve disease which people can take away with them after the first appointment.

There was even some uncertainty about whether there would be another appointment at all. Hugh, for example, said in his first interview that he was not expecting a further appointment, while Brian remembered being told that ‘if there was any further they want to look into it, I would get a letter from the local hospital to take part in a deeper scan. So at the moment I’m waiting to see whether that is what I’ll have to do.’ Norman remembered being told there was another appointment to come, but was not sure whether treatment would be offered. (See ‘Information and questions about taking part’).

We interviewed people from these early interviews again after their second appointment; with hindsight memories about the wait had often faded and it was not remembered as a particularly worrying time. Some said they didn’t even think about it, while others remembered what Hugh called a ‘slight worry’ every now and again.

The follow up appointment itself was often described as efficient, quick and easy. Lech and his sister went together, as they had both been told they had a minor valve condition. Originally they were given appointments three hours apart, but Lech was pleased that the staff managed to reorganise the times on the day so they could get home earlier. Getting to the hospital could mean a drive of 10 to 20 miles and finding parking. Norman commented, ‘Frankly it’s always a pain in the neck going into the city and the hospital’s no exception. But usually if you’re patient you can find a slot and so it was fine.’ Anthony and Pamela ‘made a day of it’ and went out for lunch afterwards. Ursula said it was possible to get there by public transport if the timing was right and she could use her bus pass. People who are taking part in a research study will often be given travel expenses, but Brian turned this down. He said, ‘I’m just doing it voluntary and that’s it. I didn’t want paying for any of it.’
 

The follow up appointment may last up to an hour, and is similar to the first appointment but uses more specialist equipment, which Fraser described as ‘better kit’. Rene said, ‘I like to go to the hospital. I just think it’s so thorough’. Hugh was also pleased to be in a hospital centre.

As with the first appointment, there were many positive comments about the friendly attitude of the staff and the way they explained the results.

In most cases, the follow up appointment will simply confirm the diagnosis from the initial screening.

Occasionally, as in Brian’s case above, something else may be discovered. Ursula was told she had an irregular heartbeat as well as the valve problem.

In most cases, people will not be called for any further scans for five years. Whilst this could be seen as reassuring that nothing is seriously wrong, Hugh wondered what would happen if the condition got worse.

The research team advise anyone who has been told they have a valve problem to consult their GP if they start getting any symptoms such as breathlessness on effort, chest pain, dizziness or increased tiredness. 

Last reviewed August 2016.
Last updated August 2016.

 

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