28 June 2019, by Siobhan Chan
“It’s a very unpredictable beast, heart failure. It’s not always as straightforward as it seems on paper.”
So says Julie Holroyd, and she should know. The Consultant Nurse in Cardiology at North West Anglia NHS Foundation Trust has been treating heart failure patients for over eight years, and now sees patients from diagnosis and throughout their heart failure journey.
“The earlier you can intervene with these patients, the more you can reduce the risk of long-term complications like renal impairment, anaemia and frailty,” she explains.
People with undiagnosed heart failure typically present to their GP with breathlessness, exhaustion and swollen ankles. Guidelines say GPs should assess the person, arrange necessary investigations, and if heart failure is suspected, the patient should see a specialist team for further assessment.
But it rarely works this way – the reality of a patient’s journey to a heart failure diagnosis is often long and convoluted. Nearly eight in ten people with heart failure are diagnosed after an emergency hospital admission, according to the latest figures for England, even though more than four in ten had visited their GP in the previous five years with tell-tale symptoms.1
With around 200,000 diagnoses of heart failure every year in the UK,2 it suggests around 160,000 people end up in A&E either because symptoms have worsened or from an urgent referral from a GP or outpatient clinic.
Dr Alex Bottle, Reader in Medical Statistics at Imperial College London, led important research into how heart failure patients are diagnosed. “Heart failure is common, serious and doesn’t get the attention it deserves,” he says. “Our research shows that it’s hard to diagnose heart failure in primary care, and GPs need more support in making the diagnosis.”
A timely diagnosis means that patients can access treatment to help them manage their symptoms, improving their quality of life. Without the treatment that comes with a diagnosis, patients can struggle to cope.
“There is no doubt that diagnosis is being made later than it should be,” says Dr Jim Moore, a GP in Gloucestershire with a special interest in heart failure. He is a member of the National Heart Failure Audit Steering group and a NICE Chronic Heart Failure Guideline committee member.
“We have important tools that aren’t as widely available as they should be, and we need to raise the profile of heart failure across community and primary care.”
More than 580,000 people in the UK are on their GP’s heart failure register, but it’s estimated that as many as 920,000 people are living with the condition. It means around 340,000 diagnoses are ‘missing’ from GP registers.2
NHS England has recognised the challenges posed by heart failure – cases of which are set to rise due to an ageing and growing population – and pledged action on earlier detection in its Long Term Plan. The Wales Cardiac Network is also prioritising heart failure, and will be publishing the All Wales Heart Failure Pathway soon.
Despite ongoing challenges to diagnosis in primary care, could a new national focus – as well as innovative programmes sprouting up across the country – herald a step change in diagnosis of this debilitating condition?
Heart failure occurs when the heart doesn’t pump blood as well as it should, often because of damage to the muscle caused by a myocardial infarction, cardiomyopathy or the effects of hypertension over time. It’s typically a condition that worsens over time and for which there is no cure.
More than half of people won’t survive the condition five years after diagnosis; just under three-quarters won’t survive past ten years.3
The root of the diagnosis conundrum is the fact that the three key symptoms of heart failure – breathlessness, ankle swelling and fatigue – aren’t exclusive to the condition.4
“One of the commonest presentations we see in our community heart failure service is the patient with breathlessness who has been seen in primary care with what appears to be a respiratory infection,” says Dr Moore. “They might have antibiotics and see their GP a few times – only then does it become apparent to the GP that it could be heart failure.”
Patients also often have comorbidities that muddy the waters, so it’s hard to distinguish whether symptoms are a result of an existing condition or possible heart failure.5 The National Heart Failure Audit 2016/17 found that nearly a third of patients hospitalised for heart failure have diabetes, and almost a fifth have chronic obstructive pulmonary disease (COPD).
Comorbidities mean spotting heart failure can take even longer. Dr Bottle and colleagues found that among people diagnosed with heart failure, those who also had COPD waited on average 1,189 days from the onset of symptoms to receive a diagnosis – over a third longer than those without COPD, at 888 days.1
Dr Moore suggests greater awareness is the first step: “It’s difficult in the early stages to make that diagnosis – we [GPs] simply need to be more aware of the condition. We also need access to BNP [brain natriuretic peptide] testing, and ideally NT-proBNP testing.”
Diagnostic routes such as BNP, echocardiograms and specialist referral are recommended by NICE to assess what treatment is needed (see “What NICE says”, below).
Dr Moore says that, anecdotally, GP access to BNP testing has improved in the last few years. This is important because it can help to rule out heart failure – if levels are below the threshold, the condition is very unlikely.
Reliable access to echocardiography, an area the NHS Long Term Plan specifies as being key to early diagnosis, is also required. But while GPs can often access echocardiography directly or refer to a specialist service that can arrange this investigation, this can be delayed, according to Dr Moore. “I even spoke to someone who told me they had to wait seven months to get an echo on a patient,” he says.
Dr Bottle, who researched this area, says: “Our work shows that those whose care follows the NICE guidance have a lower risk of admission for heart failure, and the earlier you make the diagnosis, the better the outcome and the less worry there is for patients.”
His work has found that 57% of patients whose care followed the NICE pathway had an emergency hospital admission during the study period, compared with 70% of people in whom the guidance was partially followed and 85% of people in whom the guidance wasn’t followed at all.6
Shockingly, only 7% of people with heart failure in England received care that followed this guideline within a generous six-month period (NICE recommends six weeks), and only 25% had completed the pathway by the end of the five-year study period.7
“That’s far from ideal,” comments Dr Moore. “If patients with heart failure are kept waiting for six months for a diagnosis to be made, it is very likely they will end up being admitted to hospital acutely before that.”
Each year, there are more than 100,000 admissions to hospital in the UK as a result of the condition.
What NICE says
The NICE guidelines for diagnosing heart failure recommend the following:
- Take a detailed history and perform a clinical examination
- Measure N-terminal pro-B-type natriuretic peptide (NT proBNP) if heart failure is suspected
- If NT proBNP level is above 2,000 ng/litre (236 pmol/litre), refer for specialist assessment and echocardiography within 2 weeks
- If NT proBNP level is between 400 and 2,000 ng/litre (47 to 236 pmol/litre), refer for specialist assessment and echocardiography within 6 weeks
- Be aware an NT proBNP level less than 400 ng/litre (47 pmol/litre) in an untreated person makes a diagnosis of heart failure less likely
- Perform echocardiography to exclude important valve disease, assess the systolic (and diastolic) function of the (left) ventricle, and detect intracardiac shunts – and consider alternative imaging methods if a poor image is produced by echocardiography
- Perform an ECG and consider blood tests, chest X-rays and spirometry to evaluate alternative diagnoses
- When a diagnosis of heart failure has been made, assess severity, aetiology, precipitating factors, type of cardiac dysfunction and correctable causes
Finding hidden cases
Yet across the country, there are pockets of innovation where GPs are being supported to make sense of complex presentations and symptoms that aren’t easy to differentiate.
Dr Joe Mayhew is a GP and Clinical Lead at Clinical Effectiveness Southwark in London, which aims to improve the health of the local population, and this can include making easy-to-follow clinical guides for local teams.
The team has produced a guide supporting GPs to navigate complex symptoms like breathlessness, which may uncover hidden cases of heart failure.
“The breathlessness guide is designed to help a GP decide what to do when presented with a breathless patient, and to identify the underlying cause,” Dr Mayhew says. “That means help with clinical assessment, suggesting useful questions to ask, and providing guidance on ordering and interpreting investigations.”
The team is currently producing templates for GP IT systems such as EMIS, and are collecting data on the projects for evaluation.
Funding innovation in heart failure
This summer, the BHF is launching a new innovation fund for heart failure.
The fund will test and evaluate new approaches to improve the care of patients with heart failure.
NHS healthcare organisations and not-for-profit academic institutions will be eligible for funding, and applications open later this summer.
You can find out more and register your contact details to receive alerts on key milestones on our Hope for Hearts Fund.
Supporting a diagnosis
Specialist referral offers another route to support primary care diagnosis.
Heart failure nurse Holroyd believes that specialist assessment teams provide vital assistance in diagnosing heart failure, especially when primary care is so stretched.
“Diagnosis can be complex, and there are a number of patients that don’t get picked up,” says Holroyd.
Specialist teams in secondary care have access to imaging like echo, angiograms, cardiac MRI and CT scans and can give a clearer picture of the aetiology of the disease, she says, so they can more confidently treat patients.
Julie is part of a team of primary and secondary care clinicians that recently started a programme to upskill GPs by helping them to ask the right questions about symptoms.
“Patients live with breathlessness and don’t even realise they’re breathless anymore,” she explains. “Instead of asking ‘do you get breathless?’, GPs could ask, ‘how much can you do before you get breathless? Can you walk down the corridor at a fast pace before you get breathless?’”
GPs have engaged well with the sessions, she reports, and have gone on to look at their practice lists to make sure heart failure patients are on the correct medication.
“The training gives them the confidence to look at groups of patients slightly differently,” Holroyd says.
Her team is now building a buddy system, where GPs in smaller practices can be supported by those in larger practices as well as community heart failure nurses. It is hoped this will be a sustainable way of supporting primary care with heart failure diagnosis and management.
For Gloucestershire GP Dr Moore, local initiatives will go some way towards improving diagnosis rates, but a bigger push to raise the profile of heart failure is needed.
“In this country, heart failure has not been given the prominence that it should,” he says. “There hasn’t been enough of a focus on heart failure this century, and this is a cardiovascular condition with one of the worst outcomes. I sense this changing – I was encouraged to see it in the NHS Long Term Plan.”
Professor Huon Gray, National Clinical Director for Heart Disease for NHS England, told us he agrees that early diagnosis and specialist referral “can do much to support patients and reduce avoidable admissions”.
“Over the next few years NHS England and NHS Improvement will be working with regional commissioners, hospitals, primary care networks and others to ensure equity of access to services and adherence to best practice guidance,” he says.
Dr Moore believes the Quality and Outcomes Framework (QOF) should ideally include an indicator for reviewing patients with heart failure in primary care, as recommended by NICE guidance.
“Patients with heart failure being reviewed hasn’t happened so far and would be a big step forward,” says Dr Moore. “Reviewing heart failure patients twice a year in primary care raises healthcare professionals’ awareness of different aspects of this condition, from symptoms and signs to current management.”
Nevertheless, specialist care will continue to be vital, he adds: “Heart failure specialist nurses are highly trained individuals who are superb at managing this older, very vulnerable population.”
Dr Moore is optimistic about the future for his heart failure patients, one of whom was diagnosed 15 years ago. ”It’s not uncommon for heart failure patients to live beyond 10 years after their diagnosis, and there is no reason why, with early diagnosis and appropriate treatment, this trend should not continue.”
1. Bottle A, Kim D, Aylin P et al (2017). Routes to diagnosis of heart failure: observational study using linked data in England. Heart. 2018;104:600-605
3. Taylor Clare J et al (2019). Trends in survival after a diagnosis of heart failure in the United Kingdom 2000-2017: population based cohort study. BMJ, 364 :l223
4. Hancock H, Close H, Fuat A et al. (2014). Barriers to accurate diagnosis and effective management of heart failure have not changed in the past 10 years: a qualitative study and national survey. BMJ Open, 4:e003866
5. Smeets M, Van Roy S, Aertgeerts B, et al (2016) Improving care for heart failure patients. BMJ Open 6:e013459
6. Bottle A, Kim D, Aylin P et al (2018). Real-world presentation with heart failure in primary care: do patients selected to follow diagnostic and management guidelines have better outcomes? Open Heart 5:e000935
7. Hayhoe B, Kim D, Aylin P et al (2019) Adherence to guidelines in management of symptoms suggestive of heart failure in primary care. Heart, 105:678-685.