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Heartfailurematters.org: helping heart failure patients live longer and feel better


27 July, 2010  

A user-friendly educational online tool enables healthcare professionals, patients and their caregivers to better manage heart failure

Kenneth Dickstein
MD, PhD, FESC
Professor of Medicine at
the University of Bergen,
Stavanger University Hospital,
Norway
Chair of the ESC Task Force
on the 2008 Heart failure
Guidelines
President of the Heart failure
Association of
the ESC
Kenneth.dickstein@med.uib.no

Heart failure is a chronic syndrome for which there is no cure; a serious medical condition where the heart does not pump blood around the body as well as it should. This means that blood cannot deliver enough oxygen and nourishment to the body to allow it to work normally and fluid accumulates in the body and lungs, leading to symptoms of congestion such as fatigue and shortness of breath.
Heart failure often develops because of a medical condition such as coronary artery disease with a heart attack or high blood pressure, which has damaged or put extra workload on the heart. It develops at any age but clearly becomes more common with increasing age. Around 1% of people aged under 65 years have heart failure, but 7% of 75- to 84-year-olds have heart failure and this increases to 15% in people over the age of 85. In Europe, it is the most common cause of hospitalisation in patients aged over 65 years. As many as 28 million people in greater Europe live with heart failure and about 3.6 million
patients are diagnosed with the condition every year – making it more common than cancer. Although called heart ‘failure’, it does not mean that the heart is about to stop working but that it is having difficulty working to meet the needs of the body, especially during activity. There is no cure but this is a condition that usually responds well to treatment.

Informing patients
It is important that patients with heart failure are informed and educated about their condition so they can respond to its limitations with a degree of confidence and better manage it. That is why we, through the Heart Failure Association (HFA)
at the European Society of Cardiology (ESC), have established the www.heartfailurematters.org website.
The HFA is an organisation that aims to improve quality of life and longevity through better prevention, diagnosis and treatment of the condition, including the establishment of
networks for its management, education and research. It is part of the ESC, which represents more than 50,000 cardiology professionals in 52 countries with its mission to reduce the burden of cardiovascular disease in Europe.
The heartfailurematters.org website is a userfriendly educational online tool for patients and their caregivers, which aims to help them live longer and feel better. It is designed specifically to be used by individuals with limited experience in navigating websites. Discussing the latest research on heart failure is essential to the ongoing education of cardiologists. But it is just as important to educate our patients, and that is why spreading the word about our new website among the general public is so important. Our annual meeting and our website for patients are focused on increasing awareness about the importance of detection and effective management of heart failure. Initially set up in 2007, heartfailurematters.org
offers a broad range of information, reassurance and support. In the past three years, it has been gaining greater prominence and receiving up to 1,000 hits a day. Originally in English and German, it has now been expanded into French and Spanish with the support of the Spanish Heart Foundation and the French National Society of Cardiology. There are already plans for new language versions, starting with Russian in 2010.
In addition to supporting patients and their families, it is also a tool for nurses and primary care physicians to assist them to care for, support and inform patients.
Practical information is offered about the warning signs of heart failure together with medication sheets and animations. There are also suggested questions that patients can print out and
take along to appointments to ask their doctors. Using heartfailurematters.org is a very different experience to sitting down with a doctor or nurse and having them say: “I am going to tell you about heart failure.” People can view the site
and absorb the information in their own home at their own pace. They can go back to it whenever they need to and share it with their family. One of the innovative features is the animated vocal guide (avatar) called Anna, who is there to help users navigate their way through the site.
Finding the information they need makes a big difference to patients as it empowers them with a degree of understanding.
The most popular section of the site enables patients to view a series of animations which take them clearly and simply on a journey through heart failure and its management. The narration explains how a healthy heart works, what happens to it in heart failure and how various treatments work to improve heart health and overall health. Patients need to understand why it is important for them to adhere to treatment
recommendations. The site aims to let patients know that through simple changes and a better understanding of the condition, many people can live full and active lives. The site also has videos to support information on living with heart  failure, drugs, devices and diagnoses.
We have made the site easy to understand, with simple sections for all with a wider involvement in the management of the condition. These include:

  • Understanding heart failure – explaining what it is and looking at the causes, symptoms and tests.
  • Caregivers and families – offering advice on how to help, looking after yourself, support and finances.
  • Warning signs – monitoring symptoms and when to call for help.
  • What can your doctor do? This area covers medications, devices, surgery and procedures.
  • What can you do? This section offers advice for patients on diet, exercise, managing medicines and monitoring symptoms.

There are five downloadable tools to help patients to monitor their symptoms, track possible warning signs, manage their medicines and keep a record of their appointments. A  ‘frequently asked questions’ area offers broader advice on how to live with heart failure, covering issues such as lifestyle,
relationships, emotions and support. We as cardiologists are realising how important it is for patients to be able to share their experience. This is why we have a section where patients can tell their stories. It offers reassurance and can help spread the word on good management of heart failure. The Heart Failure Association of the ESC is proud of the website, which has been developed by heart failure specialists, nurses, primary care physicians, pharmacists and dietitians from the HFA, with input from patients and caregivers from across Europe. All are involved in the ongoing development of the site, which promotes itself as offering ‘practical heart failure information for patients, families and caregivers’. In my role with the HFA, I chaired the taskforce that created the site and it is reassuring to see it doing so well. The HFA would be keen to see more hospital websites linking back to heartfailurematters.org