International SHAPE project plans education programme to save lives and improve healthcare
An international survey of the public's awareness of heart failure has revealed a woeful and worrying level of ignorance, according to the lead author of the research, which is published (Wednesday 31 August) in Europe's leading cardiology journal European Heart Journal.
Although almost 90% of nearly 8,000 randomly selected people from the nine European countries that took part said they had heard of heart failure (HF), only 3% could identify the condition from a description of typical symptoms; this was despite 6% saying they had someone in their family with HF.
The level of recognition was dismal compared with that for transient ischaemic attack (TIA or mini stroke) where half identified it from a list of symptoms, or for angina, where nearly a third correctly identified the condition.
"The low awareness of HF that we found is shocking and is putting lives at risk. It has serious implications for individuals and for public health throughout Europe. If the public don't understand how common and how life-threatening this condition is then they are not likely to seek medical help early, and they are also unlikely to demand appropriate measures from healthcare providers," said lead author Dr Willem Remme, Professor of Medicine and Director of the Sticares Cardiovascular Research Institute, Rhoon, Netherlands.
The international team of authors running SHAPE4 (Study of Heart failure Awareness and Perception in Europe) is committed in a second phase of the project to educating the public and family doctors so that healthcare for HF improves. This first phase survey involved 7,958 people between the ages of 25 and 45 and 65 and 85 from nearly 48,000 randomly selected households in the nine countries. Participants answered 32 questions in a questionnaire that had earlier been tested in two pilot studies in four countries. This is the first study ever to assess awareness of HF among the general public in Europe.
The results not only showed that most of the public taking part couldn't recognise the signs of HF, but that they also had major misconceptions about the condition. For example:
- Over half thought cancer was more prevalent than HF. (Although this is true for all cancers combined, more patients are admitted to hospital with HF than with any of the most common cancers);
- Two-thirds thought HF patients live longer than patients with cancer or HIV. (Not true. Forty per cent of HF patients die within a year of their first hospital admission. HF has worse 5-year survival than many of the common cancers and the average time between HIV diagnosis and developing AIDS is now well over a decade);
- When asked about their perceptions of the severity of a disease characterised by breathlessness, tiredness or swollen ankles, only 29% thought these represented a severe complaint. (A serious mistake as this could lead to delayed diagnosis of HF);
- A third thought heart failure was a normal consequence of getting older. (Not true. HF has many causes, but ageing of itself, is not one of them);
- Nearly a third thought that modern drugs could not prevent HF developing, although responses varied considerably between countries. (In fact, modern drugs, such as ACE inhibitors and beta blockers, can be very effective and are under-prescribed);
- Nearly 60% would worry that a colleague, neighbour or friend with HF might suddenly drop dead. (This shows an inconsistency the majority do not find HF a serious disorder, yet a majority fear it might cause sudden death. About half of deaths in patients with HF are sudden);
- Over 60% thought that a diagnosis of HF should lead to a person living quietly and reducing all physical exertion (Not true - regular exercise, such as walking, is helpful in mild or moderate cases);
- Given a list of conditions, only 9% named HF as incurring the highest healthcare costs 40% believe it is cancer and 27% HIV. (In fact HF consumes 22.5% of the total European healthcare budget, with 70% of that going on hospital admission).
There were major differences among countries in answers to several questions. Italy and the UK had heard of the term 'heart failure', with over 90% being aware of it, compared to just over 60% in the Netherlands. In Poland and Romania 90% and 83% respectively were positive about the role of drugs in reducing mortality and improving well-being. By contrast, Germany (38%) and the Netherlands (43%) were the most sceptical. Those most like to believe wrongly that HF patients should live quietly and avoid exercise were the Poles (96%), Spanish (90%), Romanians (86%) and French (71%). Among Germans and Swedes only 38% and 32% respectively thought that was the case. The British, Dutch and Italians were the most uncertain. Differences over the right lifestyle may be linked to the fact that the Spanish, Polish and the Romanians were more concerned that HF could cause sudden death than were the Italians, French or Germans.
"These results are pretty depressing," said Dr Remme, who is Chairman of SHAPE. "Ignorance of the symptoms and of what can be done to prevent and treat the condition could contribute to unnecessarily poor quality of life in tens of thousands of patients and thousands of premature deaths, and is placing a heavy burden on health systems.
"We urge everyone to educate themselves about early signs that may mean risk of heart failure and see your doctor in good time. A tremendous amount can now be done with modern drugs and devices, together with lifestyle changes, to prevent the condition, to improve the quality of life for those who have HF and to reduce the need for costly hospital admission. SHAPE will be implementing a Europe-wide awareness and education programme to improve HF care. As well as the public we will aim this at family doctors, who we discovered from the results of a parallel study, also don't know as much as they should about HF. We hope to assess the results about two years after our programme starts."
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