The first ever clinical trial of medication for the long-term management of the condition commonly known as broken heart syndrome is now underway.
The seven-year long study, funded by the National Institute for Health and Care Research (NIHR), will involve scientists and clinicians from Aberdeen, Glasgow, Edinburgh, Leeds, Leicester, Belfast and almost 1,000 takotsubo patients from 40 hospitals across the country.
Takotsubo cardiomyopathy, sometimes called broken heart syndrome, affects more than 5,000 people in the UK each year and many more worldwide. It can be fatal with 1 in 10 people dying from the initial attack or later from associated complications.
Often mistaken for a heart attack, a takotsubo attack is usually triggered by sudden emotional stress, such as the loss of a loved one, which is where the broken heart moniker comes from. However, unlike a heart attack, it is not caused by a blockage in the heart arteries but instead, a severe weakening of the heart muscle.
The long-term risk of death or serious health problems after a takotsubo attack is similar to patients who have had a heart attack. In those who survive the first attack, patients live with a higher risk of death, heart attacks, strokes and heart failure as well as higher risk of repeated takotsubo attacks.
Despite this, there is currently no proven treatment for takotsubo, so the medication and care patients receive can vary. Some patients leave hospital with no follow-up care, some receive treatment - including medication that would be suitable had they had a heart attack, but there is currently no evidence-based treatment specific to takotsubo. This is what this project hopes to achieve.
It has been suggested that a class of medicines that relax blood vessels called 'renin-angiotensin system (RAS) inhibitors' could be an effective course of treatment in the longer term for takotsubo patients. Currently used to treat heart attacks due to heart artery blockage, high blood pressure or heart failure, this study will scientifically test the effectiveness of RAS inhibitors in takotsubo to establish if this could be a treatment pathway specific to the condition.
Professor Dana Dawson, Chair in Cardiovascular Medicine at the University of Aberdeen and Consultant Cardiologist at Aberdeen Royal Infirmary, who is leading the trial, explains: “Takotsubo syndrome affects thousands of people in the UK year on year – most of whom are women. The figures are stark in that one in ten will ultimately die from their condition. It is a growing problem and with ever improving clinical recognition the diagnosis rate has increased 5-fold in the past decade.
“The long-term risk of death or serious health problems after a takotsubo attack is similar to patients who suffer a heart attack due to a blocked heart artery but despite this, there are no proven therapies for takotsubo, no treatment guidelines, leaving doctors and patients uncertain and concerned.
“We will test - for the first time, if RAS inhibitors could prevent deaths, heart attacks, strokes, heart failure and repeated takotsubo attacks in people who suffered an acute takotsubo attack.
“We hope that this will make it clear whether or not these drugs are effective at preventing repeated health problems in the long-term.
“People living with takotsubo syndrome are effectively in limbo at the moment. There is no proven therapy which means treatments can vary from person to person. We know that following an attack, the impact on the patient’s quality of life can be extremely debilitating.
“We may find the first therapy that improves survival and reduces the burden of disease after a takotsubo attack, or we may establish these are not effective and therefore redirect the search to other treatments that may work.
“Ultimately, we hope that the outcome of this study will enable takotsubo patients to live a full and healthy life knowing that their condition is being managed as effectively as possible.
“I have worked on Takotsubo syndrome for over 15 years, and I am thrilled that we are a step closer to being able to offer a clear and evidence-based treatment path to the thousands of people living with this condition.”
Professor Anthony Gordon, Director of NIHR’s Health Technology Assessment (HTA) Programme, which is funding the trial, said: “Thousands of UK people each year are diagnosed with Takotsubo syndrome which can be triggered by severe emotional stress such as the loss of a loved one. This study is the first of its kind aiming to find a specific treatment and long-term healthcare for this rapidly increasing, potentially fatal long-term condition.
“This trial demonstrates NIHR’s mission to drive life-changing research for the health and wealth of our society and ensuring more people can get involved in research. Our aim is to help new treatments reach patients earlier, helping them lead healthier and happier lives, while reducing the burden on the NHS.”
The investigators are working towards extending the study in Australia through collaborations with colleagues from Perth and Adelaide.
Case Study
Brenda Young is 57 and lives with her husband Bryan (56), her two children, Jamie (33), Jordan (31) and their two dogs (Baxter and Sidney) in St Fergus, in Aberdeenshire, Scotland.
Brenda leads an active, busy life and thrives in her role as a residential social worker in nearby Peterhead.
This changed in late November last year, when a devastated Brenda stood by her mum’s bedside and watched her pass away after a complicated illness.
Within minutes of her mum’s passing, Brenda describes feeling an ‘intense, overwhelming pain in the middle of my chest.’
“I just remember thinking – this cannot be happening – not today. I knew there was something really wrong. My family were all around my mum’s bedside and I thought ‘how can I tell them I’m having chest pain? Not now!’”
Following a series of tests, Brenda was told by one of the doctors that she had ‘probably had a heart attack’.
Brenda was quickly admitted to hospital and following further tests, was advised that what she had experienced was the ‘broken heart syndrome’ or a takotsubo cardiomyopathy attack. Brenda was perplexed: “I said, what on Earth is that?! I had never heard of this before.”
Over the next few days and weeks, Brenda was treated with medication and given the same advice as she would following a heart attack. This is despite the two conditions being physiologically different and no clear evidence that any of the medicines prescribed would help.
Keen to help in the effort to find out more about takotsubo, Brenda is delighted to be invited to be part of this trial looking for a treatment specifically for takotsubo cardiomyopathy.
Brenda is recovering at home and is starting to ease back into work. She feels strongly that more people should be aware of takotsubo and is hopeful that this trial will open the door to a specific treatment for the condition.