Heart Valve Voice report sets out recommendations to prioritise development of NICE heart valve disease guidelines

Nov 3 2016

UK charity Heart Valve Voice today launches its report, ‘Towards a Heart Healthy Future: a 2020 Vision for Heart Valve Disease’ at a parliamentary event attended by MPs across the country. The report sets out recommendations to prioritise the development of NICE guidelines to ensure that people living with heart valve disease receive a timely diagnosis and have equal opportunity to access effective and appropriate treatment for the condition, regardless of where they live.

Heart valve disease is a growing concern in the UK, with prevalence expected to increase significantly in the next few years and levels of awareness and diagnosis remaining low. Approximately 1.5 million people over the age of 65 are currently affected by the condition, and this figure is expected to rise to 3.3 million by 2056, representing a 122% increase. The chances of developing the condition increase with age; estimates suggest that by the age of 75, the prevalence of heart valve disease is over 13%.  With the number of people over 65 set to double to 19 million by 2050, the prevalence of heart valve disease is also set to increase. Studies also show that outcomes for patients who aren’t treated are significantly worse than for those that have undergone surgical interventions.

In order to combat this growing issue, Heart Valve Voice has set out a number of recommendations to improve the diagnosis, treatment and care of heart valve disease in the face of significant challenges for the NHS and with an aging population, including: the introduction of effective and targeted education and awareness-raising campaigns for primary healthcare professionals and the public, routine use of the stethoscope in over 65s, the development of NICE heart valve disease guidelines as a priority, improved access to echocardiography (ultrasound of the heart) for GPs and equal access to treatment for patients across the UK and compared to the rest of Europe.

“The UK’s ageing population, and the increased risk of developing heart valve disease with age mean that we are going to see a steep rise in the number of cases in the coming years,” said Mr Chris Young, Consultant Cardiothoracic Surgeon, Guys and St Thomas’. “We must work to set in place protocols across all levels of the healthcare system to make sure that these patients are not slipping through the net and are diagnosed early and reach the appropriate secondary care team for treatment. This in turn will provide patients with a longer, better quality of life and also reduce the long-term cost burden on the NHS.”

Heart valve disease is a common, but treatable, heart condition where the heart valves no longer work properly. However, many patients do not suffer severe or visible symptoms, or put their symptoms down to the natural ageing process (shortness of breath, fatigue, dizziness and chest pain), making diagnosis difficult. Early identification, referral and subsequent treatment are essential for patients with heart valve disease, because if left untreated, half of those patients will die within two years of developing symptoms.

A lack of public awareness of the signs and symptoms of heart valve disease and the severity of the condition has also contributed to under-diagnosis. A recent survey of people aged over 60 in the UK found that 94% of respondents did not know what the most common form of the disease, aortic stenosis, was and almost three-quarters (72%) claim that their doctor rarely or never checks their heart with a stethoscope, despite this being one of the first steps to detect heart valve disease. The survey found a disparity amongst the sexes, with 81% of women versus 66% of men saying they are rarely or never checked with a stethoscope.

“My condition was missed and almost cost me my life. Much more needs to be done to ensure people living with heart valve disease receive a timely diagnosis via a simple stethoscope check from their doctor. As a charity, we are working hard with patients, doctors and policy makers to improve the quality and longevity of people’s lives. This would ensure patients have the best chance of being diagnosed early and receiving appropriate treatment no matter where they live in the UK,” commented Mike Higginbottom, Chair of Heart Valve Voice Patient Action Group and heart valve disease patient.

In addition to under-diagnosis, there are persistent inequities in access to treatment across the UK, despite the clear benefits for patients, the NHS and the wider economy of the optimal treatment of heart valve disease. Where a patient lives affects their treatment so whilst some patients are able to access the best possible treatment for their condition, many others are missing out. Latest data from 2014-15 show disparities in rates of valve replacement and the minimally invasive procedure, transcatheter aortic valve implantation (TAVI). In fact, some CCGs undertook no TAVIs at all. A recent study on outcomes of treatment decisions in patients with severe aortic stenosis found that less than half of patients diagnosed with aortic stenosis were referred for surgery by cardiologists. The most common reason given was that the patient was not showing symptoms of aortic stenosis, or the condition was not severe enough to merit surgery. What was particularly concerning, was that the study also found outcomes for the patients with aortic stenosis who did not receive any treatment were significantly worse than those who had some sort of surgical intervention. The UK also lags behind its European counterparts in the treatment of aortic stenosis. For example, in 2011 the conventional aortic valve surgery and TAVI rates in the UK were lower than in comparable European countries and by 2013 the UK TAVI intervention rate was less than half the European average.

“It is worrying that there are such discrepancies in the treatment of heart valve disease patients across the UK. This simply isn't good enough – where you live shouldn’t have a bearing on the type of care you receive,” said Professor Bernard Prendergast, Consultant Cardiologist, Guys and St Thomas'. “As part of our 2020 Vision for heart valve disease treatment, we feel that NICE should prioritise the development of guidelines on the diagnosis, management and treatment of heart valve disease, ensuring consistent standards of care for patients everywhere.”

“Heart Valve Voice’s mission is to improve the diagnosis, treatment and management of heart valve disease in the UK. Through our work with patients, clinicians, policy makers and the general public we have made great progress over the past 12 months. However, much more needs to be done to ensure people living with heart valve disease receive a timely diagnosis and can access effective and appropriate treatment for the condition,” commented Wil Woan, CEO of Heart Valve Voice. “This report sets out key recommendations to address these barriers which are present at every step of a patient’s treatment pathway.”