Activating patient engagement to evolve AF care

Elena Arbelo

Patient engagement is key to optimising outcomes in the treatment of atrial fibrillation (AF) argues Elana Arbelo (Consultant Cardiac Electrophysiologist and Community Cardiologist, Hospital Clinic Barcelona, Spain). In this article she discusses how to activate patient engagement through innovation and suggests that digital pathways could be a “game changer” for patients and physicians alike.

Despite the challenges electrophysiologists faced in 2020, there has been significant progress around the management and treatment of AF patients.

AF currently affects 11 million people across Europe. AF has a well-known negative impact on the quality of life (QoL) for patients and their families, and places a significant burden on society and wider economies. Patients with AF have significantly poorer quality of life than the general population in several SF-36 subscales, with reductions of up to 47%.

By 2030, due to demographic changes, the number of people affected by AF in Europe will increase by 70% and by 2050 Europe is expected to have the greatest increase of AF compared to other regions. It is estimated to reach 14–17 million, with up to 215,000 new cases a year.

There is an imperative to treat AF earlier and more strategically to slow disease progression, especially in a post-COVID healthcare landscape in which health care service capacities are reduced. On the front-lines of AF care, we are working through the impact of the pandemic with longer consultation waiting times, delays or cancellations of elective procedures and patients presenting later with more severe complications or more severe disease states. Treating more patients with less resources is the new reality.

New guidance on AF treatment
In August 2020, the ESC published its updated AF treatment guidelines. These guidelines recommended greater patient involvement in treatment decision-making, recognising that quality of life and slowing of disease progression are more meaningful outcomes for patients.

For many, this is unsurprising. In order to improve outcomes for patients with AF, there is increasing recognition that AF treatment decisions must be based on shared decision-making between patients and their physicians.

By taking a broader view of disease management and using QI (quality indicators) as markers for success or as a desired outcome, AF treatment will be more patient focused, will reduce the burden of disease on patients and on HCPs, and allow for the establishment of a new ABC patient management pathway.

Defining treatment success

I recently took part in a Twitter chat hosted by Biosense Webster on shared decision making in AF. One of the topics discussed that evening was how do we define treatment success for patients and HCPs? Treatment objectives include stroke prevention, symptom control and managing risk factors and comorbidities, but one of the Tweet chat polls suggested that key treatment outcomes may sometimes differ between patients and HCPs. However, both agree on the fact the focus should be on the outcomes that matter to patients.

On the taskforce for developing QIs for AF care and adult outcomes for the European Heart Rhythm Association (EHRA) of the European Society of Cardiology (ESC), there were four patient representatives involved. When developing the QIs for outcomes the multidisciplinary task force considered the following levels: consequence of disease, consequences of treatment and improving quality of life by encouraging PROMs (patient-reported outcome measures) to measure QoL from a patient perspective.

The importance of patient perspectives and engagement is clear in the updated ESC guidelines. The guidelines recommend introducing tools to measure quality of care, identify opportunities for improving treatment quality, routinely collect PROMs to measure and evaluate treatment success and improve patient care.

The National Institute for Health and Clinical Excellence (NICE) in the UK will publish its updated guidelines in the coming months, aiming to ensure that people receive the best care to help prevent AF complications, such as a stroke, and reduce the risk of the side effects of treatment, for example bleeding. It will be interesting to see if the NICE guidelines will follow similar recommendations to those from the ESC.

Activating patient engagement through innovation

Activating patient engagement is fundamental if we want to treat AF earlier in the patient journey and educate patients about their treatment choices. There are different opinions on approaching shared decision making, but how we as EPs encourage patient engagement is vital. Not every patient is the same; therefore focusing on the individual expectations has to be considered. This point was highlighted during the Tweet chat with one patient representative from the Arrhythmia Alliance commented: patients don’t chose to be patients.

By centring the patient experience and perspective in the management of AF, innovative solutions can open new possibilities. We have seen how the quick adoption of digital technologies, or telemedicine, in many countries during the pandemic helped bridge the gap between patients and EPs in a time of crisis. The success of remote monitoring and appointments is lauded by EPs and patients, including older patients, and is likely to become a permanent part of many patients’ care.

There needs to be more emphasis on AF public health campaigns with accessible online resources, such as Get Smart About AFib to increase awareness of the symptoms of AF, how people can reduce their risk and understand what treatment options are available to them. Understanding their diagnosis and treatment options will empower patients to have better conversations with their doctors.

Looking forward

With the rollout of COVID-19 vaccines, there is reason to be cautiously optimistic about a return to normality in the future; however in the management and treatment of AF we should focus on moving forward and continue the evolution of how we approach and deliver AF care. The development and implementation of digital pathways to manage AF patients and provide integrated care is a starting point and could be the game changer patients and EPs have been waiting for.

The next critical step is to implement the ESC guidelines in the real clinical world. Continuing to collaborate with health innovators and patient groups will change how we deliver AF care for the better. In five years’ time how AF is managed and treated will look radically different from 2021.

Prof Elena Arbelo is a consultant to Biosense Webster.


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