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Atrial fibrillation: finding the missing 300,000

A major national effort is underway to find hundreds of thousands of people at heightened risk of a stroke. Rachael Healy talks to the healthcare professionals and NHS leaders at the front line of a push that could help avert countless disastrous cardiovascular events.

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25 July 2019, by Rachael Healy

A hidden threat rests in the hearts of hundreds of thousands of people in the UK right now.

This concealed danger is atrial fibrillation (AF), the heart rhythm disorder, where the pooling of blood in the atria risks forming clots that cause disastrous strokes.

AF elevates stroke risk to five times that of the general population. If someone with AF has a stroke, it’s more likely to be debilitating1 and they would be less likely to survive.2

Catching the condition early and treating it appropriately becomes vital. Anticoagulation can prevent around two-thirds of AF-related strokes. Yet across the UK today, it’s estimated that around 300,000 people living with AF are oblivious to the risk, within a total number affected thought to be over 1.6 million.3 Even among those who are diagnosed, more than 100,000 patients across the UK with an elevated stroke risk are not on anticoagulants.4

Numerous obstacles stand in the way of finding and treating every AF patient.

Firstly, many of these 300,000 undiagnosed people won’t experience any symptoms. One solution is opportunistic case-finding during routine appointments, but primary care services already face stretched teams and budgets.Once patients have been diagnosed with AF, services need defined pathways to manage the condition successfully. Yet these are not in place in some areas. Healthcare professionals can feel underprepared to make confident decisions about anticoagulation.In spite of these challenges, change is arriving that could make a dramatic difference to at-risk individuals and care-givers alike.

A need to act

Momentum has been building in recent years, with fresh initiatives in the UK pledging to tackle these issues. Some look to detect the missing 300,000; others to find anticoagulation that works for diagnosed patients.

They’re already having an impact – the UK diagnosed prevalence rose by nearly 220,000 between March 2016 and March 2018, and much of this rise will have been down to improved diagnosis5, and in certain areas the proportion of patients being anticoagulated is rising. Nevertheless, politicians have recognised the urgent need to do more. 

Scotland’s Cross-Party Group on Heart Disease and Stroke released a 2018 report setting out 10 recommendations for the Scottish government to help accelerate improvements in diagnosis and treatment. These include targeted detection among high-risk groups, new technologies to increase detection in primary care, and specialised AF services to improve management.

A further boost came in January 2019, when NHS England’s Long Term Plan committed to help nurses and pharmacists in primary care find and treat those with high-risk conditions, including AF.

Then in February 2019, the BHF joined forces with NHS England, Public Health England (PHE) and around 40 other organisations to launch landmark national ambitions linked to the ‘ABC’ numbers – AF, blood pressure (BP) and cholesterol. For AF, the goal is to increase the detection rate from 79% to 85% and raise the proportion of patients on anticoagulants from 84% to 90% – all by 2029.

Watch: How does AF cause a stroke?

‘We have a duty to do more’

“We wanted to introduce cardiovascular prevention ambitions, the ABCs, because we had concerns that, as a country, we were becoming slightly complacent to the challenges that remain around cardiovascular disease (CVD),” says Professor Jamie Waterall, National Lead for CVD Prevention and Associate Deputy Chief Nurse at PHE.

“We have a duty as a system to do more on this because our current outcomes are not where they need to be. AF clearly needed to be included as one of the three areas of focus because we know we have large numbers of people in the country with AF that remain undetected and sub-optimally managed.”

First steps towards achieving these goals have already been taken. NHS RightCare is working with every clinical commissioning group (CCG), supporting them to improve the way they address AF care. And in May 2019, NHS England and NHS Improvement committed to a new programme across 23 CCGs to test how clinical pharmacists can help manage AF.

Meanwhile, a new national audit called CVDprevent – the feasibility study for which was funded by the BHF – hopes to help primary care professionals make better use of data to treat high-risk conditions.

Prof Waterall insists it’s not about working harder, but smarter. “With this area we absolutely know what works in terms of the intervention… We know what the effective treatments are and the evidence is strong that they work, but we’re just not scaling,” he says.

“I think we need really strong clinical leadership to recognise that this is an area that does deserve to be prioritised. If we just tell that system to work harder, that's not going to change things. So how do we do things differently? How do we try new approaches?”

What NICE says

An ECG trace readout

NICE guidelines on AF are currently being updated. The update will focus on some of the areas explored by the ongoing detection and anticoagulation programmes, including: diagnosis and assessment, stroke and bleeding risks, interventions to prevent stroke, rate and rhythm control, and prevention and management of postoperative AF.

For now, NICE recommends performing a manual pulse check for the presence of an irregular pulse in patients who’ve experienced breathlessness, palpitations, dizziness, chest discomfort, a stroke or transient ischaemic attack (TIA). If you detect an irregular pulse, the patient should be offered an ECG.

Once AF is diagnosed, create a personalised care package for your patient. This should include stroke awareness and prevention, rate control and assessment of symptoms for rhythm control.

Stroke risk should be assessed using the CHA2DS2-VASc score, which looks at a patient’s age, and history of hypertension, diabetes, heart failure and stroke. Anticoagulation should be offered to anyone with a CHA2DS2-VASc score of 2 or above.

Discuss the options for anticoagulation with your patient. NICE’s recommended anticoagulants are: apixaban, dabigatran etexilate, rivaroxaban or a vitamin K antagonist.

Building on solid foundations

In parts of England where healthcare professionals are already trying to think differently about AF, initiatives are being facilitated by the Academic Health Science Networks (AHSNs). These networks have been exploring solutions to the AF detection challenge since their inception in 2013. Projects have included everything from animations to raise awareness around anticoagulation, to detection programmes involving underutilised healthcare professionals and tools to help primary care staff build a business case for local AF services.

“Initially when AHSNs were set up, they used national datasets to identify the gaps locally, and looked for opportunities to work with NHS stakeholders and industry, [as well as] what tools had already been developed and what was working well,” says Faye Edwards, AHSN National Programme Manager for AF and stroke prevention. “You had pockets of innovation that were developed… including some that won lots of awards and have been rolled out quite widely.”

Existing national schemes such as the NHS Health Check programme in England continue to provide a systematic means of identifying at-risk patients. A pulse check is a mandated element of the BP testing component and is recognised as good clinical practice.

Case-finding of asymptomatic individuals during routine interactions with the health service is increasingly targeting people who would benefit most from anticoagulation if they did have AF, so that resources are deployed efficiently.

Approaches to raising detection rates are now going beyond traditional manual pulse checks to incorporate new technologies and improved processes.

Pulse checks and new tech

For example, in some areas pharmacists have BP monitors [PDF] that can check for an irregular pulse. In others, podiatrists are starting appointments [PDF] with pulse checks.

Handheld single-lead ECG devices, such as AliveCor, imPulse, MyDiagnostick and Zenicor-ECG, could also help with detection in primary care (see ‘Future tech’, below). Clusters of GP practices in Scotland have purchased devices, while in 2017 the AHSNs were commissioned to distribute more than 6,000 to English GPs.6

NICE guidelines issued in May 2019 suggest further research is needed to discover whether these technologies lead to more patients being diagnosed with AF, and how the ECGs can be read by healthcare professionals. It also encourages practices already using the technology to collect data to help the research process.

five-year study has just begun to gather such data. Led by the University of Cambridge, patients from 300 GP practices will be trained to use a handheld ECG device. Healthcare professionals will analyse the data and refer them for AF treatment if required. The results of the study will inform whether a nationwide programme is launched.

Glasgow GP Dr Emma Douglas leads a GP cluster in the city that has just concluded a one-year trial with an AliveCor device. Here, patients attending for annual chronic disease reviews are given a pulse check as standard. With devices purchased, the healthcare assistant or practice nurses began taking ECG readings too, to identify AF more quickly.

“We’d only do them with patients where, if they were found to have AF, [they] would get treatment,” Dr Douglas says. “We’ve got five patients who have started a [novel oral anticoagulant] (NOAC) because of AliveCor. The patients like doing it, the technology is a talking point and we’ve not had to extend the average length of appointments.”

The cluster learned some useful lessons. The devices require a smartphone and internet availability to work, which can incur extra costs. And the ECG readings are sometimes inconclusive – in these cases a GP may interpret the result or the patient may have to be referred to cardiology.

These diagnostic technologies are advancing continually. Professor Lis Neubeck, Head of Cardiovascular Health in the School of Health and Social Care at Edinburgh Napier University, is developing new ways of picking up an irregular pulse and monitoring asymptomatic patients over longer periods.

“There are a number of different devices already available,” says Prof Neubeck. “But the key element is recognising that technology is very much not static and so we cannot build a system around one piece of technology. We need to build systems where the technology is interchangeable… so that if you remove what was there before, you haven’t caused the collapse of an entire process.”

Future tech

Binary code scrolling downwards

Rapidly evolving technologies offer exciting prospects for faster and more convenient detection of heart rhythm problems.

These innovations include measuring a patient’s pulse by pointing a camera into their eye, or by sensing changes in the colour of their skin.

Personal and wearable tech may also play a role. There are already smartphone apps that use photoplethysmography – technology that picks up blood volume changes at the skin surface – to detect pulse rate when a finger is placed over the phone’s camera lens. And certain smart watches can monitor the pulse for longer periods and whenever it’s needed.

Prof Neubeck explains: “It’s really aimed at consumers, but the application of that could be fantastic for people with intermittent arrhythmias. If you’re symptomatic you just activate your [smart watch] at the time you have symptoms… without having to wear cumbersome monitors.”

With all of these technologies, healthcare professionals will have to develop robust ways of storing and processing the patient data generated. Professor Neubeck says: “We have to be mindful of what we’re doing with large volumes of personal data and what we’re doing to protect their privacy.”

Virtual clinics

Once AF is detected, patients need to be treated and managed appropriately to reduce stroke risk, and substantial innovation is happening here as well.

Helen Williams is a consultant pharmacist and Clinical Network Lead for CVD across Southwark and Lambeth CCGs, as well as an AF advisor to the AHSNs. She was involved in the creation of two successful AF management projects: the pan-London AF toolkit [PDF] and pharmacist-led virtual clinics.

The virtual clinics began in Southwark and Lambeth CCGs to check whether diagnosed AF patients needed anticoagulation. GPs create a list of their untreated AF patients, then a specialist – in this case a pharmacist, but it could also be a specialist nurse or GP – comes in to review it.

“This tended to lead to a wide-ranging discussion around anticoagulation, the new agents, monitoring: all of those things that would affect why the GP was confident to treat or not treat,” says Williams. “For each of the patients they’d agree a management plan, then the GPs would deliver the plan.”

During a 12-month period, 1,574 AF patients across 91 GP practices were reviewed. This led to 1,292 people being anticoagulated. The impact was immediate: between 2014 and 2018 the area recorded a 22.5% drop in the number of strokes in people with known AF.7

The scheme tackles issues that could otherwise prevent ideal AF management. Bringing in an expert allows GPs to learn more about AF and gain confidence in treating it. “There are lots of myths and misconceptions around aspirin, prior bleeding, age, frailty and falls,” Williams explains. “Those sorts of things are barriers that the virtual clinics help to overcome.”

Bringing in a specialist also spreads the workload. “We know GPs are under so much pressure, there’s no additional capacity for them to take on more work as we need to treat more AF,” says Williams. “General practice is going to need more support from pharmacy, nursing and other services."

Pharmacists and detection

Schemes across the UK are exploring the potential for pharmacists to detect new cases of AF. In North London, Capture AF enlists community pharmacists to carry out pulse checks on people who come in for advice and use the AliveCor Kardia mobile device, where appropriate. If an irregular heart rhythm is detected, they’re referred on to a specialist service for diagnosis and treatment.

Similarly, Care City, one of seven national health and social care test beds funded by NHS England, sees pharmacists referring detected patients to an AF one-stop shop at Bart’s Health Trust. Care City has reported a swifter patient journey, reducing the standard referral time from 12 weeks to around three. 

IT solutions

The virtual clinics are now being rolled out to 23 other CCGs in England, offering targeted checks and treatment to more than 18,000 people to prevent around 700 strokes.

But the idea of patient audit is already being used in a simpler form across the UK, using IT interfaces.

In Wales, the AF Audit Plus [PDF] tool helps GPs look at lists of patients who are in the high-risk category for AF or who have already been diagnosed. They can then conduct reviews of diagnosed patients and check they’re being anticoagulated.

In Cardiff and Vale, as part of the health board’s ‘Stop a Stroke’ campaign, healthcare professionals have teamed up with the Welsh government’s informatics service to create an improved digital portal. In time, this could be rolled out to other areas of Wales.

Meanwhile, the Scottish Primary Care Information Resource (SPIRE) has been created by NHS Scotland. It will allow GP practices to run reports identifying patients with AF who require anticoagulation. The functionality is based on GRASP-AF, a tool already available to NHS GPs in England.

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Patient journeys and integrated care

For AHSN programme manager Edwards, the next step is validating the whole pathway. “Now that we're picking up people with AF more frequently, we really need to make sure that the rest of the pathway is suitable,” she says. “We do quite a lot of work with CCG groups to help them look at how their AF pathway is functioning as a whole and suggest improvements where needed.”

Integrated care is key for AF, so many projects have focused on connecting healthcare professionals and services (see: ‘Integrated care: George’s story’, below). “One of the problems we’ve had in the past with AF is we’ve siloed everything,” says Williams. “We need better communication across the boundaries.”

The pan-London toolkit she helped create describes the full patient journey, answering questions that healthcare professionals may have at every stage. It also provides a tool to help them create the business case for improving AF detection and management in their area.

Integrated care: George's story

George ThomsonGeorge Thomson, 65, from Milnathort, Kinross-shire was diagnosed with AF in late 2018. He’d never noticed any symptoms before, but after feeling dizzy one night he visited his GP for a check-up.

A pulse check revealed an irregular heart rhythm. George’s GP prescribed the anticoagulant rivaroxaban to reduce stroke risk, and beta-blockers. George was then referred to the Tayside specialist arrhythmia clinic, which won a BHF Alliance Award for integrated care in 2017.

Around seven weeks later, George attended the clinic and met arrhythmia nurse specialist Zanna Christie. “She ran through what the options were likely to be for me going forward,” George says. “Zanna is a particularly good communicator and that makes such a difference if you’re receiving information in terms that you understand. I had no idea that so many people suffered from the condition, so that was quite reassuring too.”

George had an angiogram at Perth Royal Infirmary, and then two cardioversion procedures at Ninewells Hospital in Dundee. After the second one, he noticed that his pulse was down to 52bpm. Unsure whether this was too low, he contacted the Tayside cardiac team directly, who were able to reassure him. “The communication from Ninewells was quite good because they gave you the team’s number,” George explains. “You can get right through to them and the person I spoke to was immediately able to help me.”

The specialist clinic monitors AF patients to ensure they’re always on the best treatment to manage their condition. George is still taking rivaroxaban and beta-blockers and his next appointment with Christie will assess how well these are working and whether he needs any further procedures.

“I have to say that all the way along, in terms of the process, Zanna was fantastic,” George says. “I felt that she was in very good control over what was happening. I think the service that’s been provided to me by our health service is outstanding.”

In Northern Ireland, the BHF is about to start working with GP practices in the Southern Health and Social Care Trust to create better patient pathways for AF. Patients with AF will be reviewed and their treatment adjusted if necessary. The results will be tracked and analysed, to find solutions that help reduce AF-related strokes across the nation.

Meanwhile in Tayside, Scotland, GPs can refer patients with AF directly to a new nurse-led specialist arrhythmia service for treatment and long-term care. This specialist service - run out of Perth Royal Infirmary, Ninewells Hospital, Stracathro Hospital and Arbroath Infirmary - has built good relationships with local GPs and helped boost AF knowledge, giving primary care staff more confidence around anticoagulation.

Arrhythmia Nurse Specialist Zanna Christie works as part of this specialist service. “The AF clinic has gone from strength to strength,” she says. “It got so busy we had to get another [nurse] on board. Patients really appreciate our clinics and like the accessibility – it’s really reassuring for them and makes them less anxious about their condition.”

Demand has led to the creation of around 11 AF clinics each month in Tayside. “When we first started, we were still finding people referred to our clinics who weren’t on anticoagulation,” Christie says. “As people have got more confident with anticoagulation, partly as letters get fed back to GPs from our clinical consultations, we don’t have as big a problem.

“The message has really come across now – as soon as you pick up AF, assess stroke risk, and if appropriate put your patient onto anticoagulation. Don’t wait for referral into cardiology.”

Ensuring all staff feel confident in their knowledge of AF and how to treat it is crucial to building an efficient patient pathway, explains Edwards. “There are a lot of assumptions that people make about patients being too elderly or that their risk of bleeding prevents anticoagulation. Your prescribers need to be confident to know that they're not going to cause harm.”

Christie, Dr Douglas and healthcare professionals across the UK are developing innovative initiatives that meet local needs. With ambitions to focus on and a growing range of examples showing how they could be achieved, proactively tackling AF may soon be a routine part of primary care across the four nations.

“As healthcare professionals, we know the devastation that preventable diseases have on individuals, communities and families,” says Prof Waterall. “We know that [many] of these events could be avoided if we got better at managing those big risk factors like AF.

Further resources for professionals


1. Lamassa M, Di Carlo A, Pracucci G, et al (2001) Characteristics, outcome, and care of stroke associated with atrial fibrillation in Europe: data from a multicentre multinational hospital-based registry (The European Community Stroke Project). Stroke 32: 392–8

2. Marini C, De Santis F, Sacco S, et al (2005) Contribution of atrial fibrillation to incidence and outcome of ischemic stroke: results from a population-based study. Stroke 36: 1115–19

3. BHF UK estimate based on PHE England analysis

4. BHF analysis of latest Quality & Outcomes Framework achievement data

5. BHF Analysis of Quality and Outcomes Framework UK prevalence data, 2015/16 and 2017/18

6. Primary Care Cardiovascular Society update: 'NHS England Procurement of Mobile ECG devices'

7. Source: Lambeth and Southwark CCGs. Pharmacist-Led Virtual Clinics to Improve Rates of Anticoagulation for Atrial Fibrillation in General Practice. Presentation.

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