PULSE survey: Population Survey on Knowledge, Gaps and Perception of Heart Rhythm disorders—an initiative of the Scientific Initiatives Committee of the European Heart Rhythm Association

Abstract

Aims

Despite increasing prevalence, the general population lacks knowledge regarding diagnosis, implications, and management of cardiac arrhythmias (CA). This study aims to assess public perception of CA and identify knowledge gaps.

Methods and results

The 36-item PULSE survey was disseminated via social media to the general population and conducted under the auspices of the European Heart Rhythm Association Scientific Initiatives Committee (EHRA SIC) with EHRA patient committee support. Among 3924 participants (2177 healthy, 1747 with previously diagnosed CA; 59% female, 90% European), 81% reported fear of CA. Females were more likely to be ‘very’ or ‘moderately afraid’ than males [odds ratio (OR) 1.159 (1.005, 1.337), P = 0.046]. While most recognized complications of CA—heart failure (82%), stroke (80%), and death (75%)—43% were unaware that CA can be asymptomatic. Those with cardiopulmonary resuscitation (CPR) training in the past 5 years were 2.6 times and 4.7 times more confident identifying sudden cardiac death and initiating CPR (P < 0.001). Confidence was lower in retired participants [OR 0.574 (0.499, 0.660), P < 0.001] and Southern Europeans [OR 0.703 (0.600, 0.824), P < 0.001]. Without CPR training, only 15% felt confident initiating CPR. Among CA participants, 28% reported severe to disabling daily symptoms. Males were more often asymptomatic (20% vs. 9%, P < 0.001). Treatment rates were comparable between sex categories (81% vs. 79%, P = 0.413). Interdisciplinary shared decision-making processes were reported by 4%. Notably, 1 in 10 CA cases was self-diagnosed using a wearable device, and 30% of CA participants used smartwatches for self-monitoring.

Conclusion

Significant knowledge gaps regarding CA exist in the general population. Targeted educational initiatives could be a viable tool to enhance public knowledge, confidence in detecting and managing arrhythmias, particularly for women, who experience greater fear and symptom severity despite similar treatment rates.

Graphical Abstract

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Introduction

The prevalence and incidence of cardiac arrhythmias (CAs) are increasing in Europe affecting millions of people.¹ Atrial fibrillation (AF) is the most common sustained arrhythmia with a lifetime risk of 1 in 3 individuals at the index age of 55 years in European descendants.¹ As highlighted in the current European Society of Cardiology (ESC) guidelines for the management of AF, self-monitoring of heart rate and rhythm by taking the pulse is a possible screening tool for early detection of arrhythmias such as AF.¹

The range and manifestations of CAs vary widely, encompassing conditions that may be entirely benign to those associated with significant morbidity and mortality.^1,2 Particularly life-threatening CA that can lead to sudden cardiac death (SCD) poses a significant challenge in medical practice due to their considerable social and economic impact.² Immediate initiation of cardiac resuscitation (CPR) in individuals suffering from SCD is associated with higher survival rates after cardiac arrest and depends on preclinical first responders that include medical laypeople.³ This underscores the importance of providing CPR training and access to external defibrillators to laypeople and raising public awareness to enhance their capacity to act as effective first responders.⁴

Due to the high prevalence of CA, the general population, however, is not solely faced with the risks of life-threatening conditions but also with the broader implications of managing these disorders and maintaining overall cardiac health. This includes the widespread use of wearables, such as smartwatches, fitness trackers, and other devices.⁵ These devices can track heart rate, rhythm, and other physiological parameters, providing users with real-time information for heart health monitoring.⁵ However, they also introduce individuals without specialized medical knowledge to the complex and multifaceted subject of CAs, raising both opportunities and challenges in personal health management.⁵ As stated in the EHRA practical guide,⁵ many physicians perceive potential benefits from digital information and workflows. However, without sufficient knowledge and education, misperception and anxieties may occur as well as futile diagnostic testing.

Due to the frequent occurrence of CA, their impact on people's health status, the healthcare system, and an increasing use of wearables, it is crucial to increase awareness and educate the general population about CA.

Herein, we conducted a cross-sectional survey to explore the knowledge, educational gaps, and perception of CA in the general population, providing insights into future necessary steps to increase awareness, enhance education, and improve healthcare outcomes.

Methods

Study design

The PULSE survey was conducted on behalf of the European Heart Rhythm Association Scientific Initiatives Committee (EHRA SIC) and EHRA patient committee to provide cross-sectional data on knowledge, educational gaps, and perception of CA in the general population. The survey was based on a 36-item questionnaire, distributed via social media accounts and newsletters of national cardiac societies and foundations from 1 March until 3 June 2024. The survey was translated and available in 12 languages (English, German, Spanish, Italian, French, Serbian, Portuguese, Swedish, Polish, Dutch, Hungarian, and Greek) by members of the EHRA committees. It consisted of three main sections: (i) baseline data (age, sex, education, professional status, and country of residency) and knowledge about CA (symptoms and outcomes), (ii) self-involvement, and (iii) a section for participants who were suffering from a CA themselves (health literacy, diagnosis, effect on daily life, and rhythm monitoring). The full survey in English can be found in the Supplementary material.

Participation in the survey was entirely voluntary, conducted online, and ensured complete anonymity. There were no specific inclusion or exclusion criteria for participating in the survey. Participants who already suffered from a previously diagnosed CA were asked to provide additional information within the survey. Participants were categorized as either healthy or CA participants based on their response to question #28: ‘Do you have a heart rhythm disorder? Yes/No’. Furthermore, individuals who were neither medical professionals nor CA participants were classified as medical laypeople.

Throughout the survey, the medical term ‘cardiac arrhythmia’ (CA) was replaced by the word ‘heart rhythm disorder’ to align with the non-medical language of the general population. Informed consent was obtained from all participants. Participants were provided with information about data protection, anonymization, and subsequent data analysis. The study was conducted in accordance with the provisions of the Declaration of Helsinki and its amendments. The EHRA SIC approved the study.

Data management

Data were prospectively and electronically collected via SurveyMonkey (SurveyMonkey.com, Dublin, Ireland). The survey was performed using anonymized data only. All data were protected from unauthorized external access, as only the authors of the manuscript were permitted and enabled access to these data. The investigators were responsible for data storage.

Statistics

This cross-sectional survey examines the knowledge and attitudes towards CA in 3924 individuals participating in the PULSE survey—Population Survey on Knowledge, Gaps, and Perception of Heart Rhythm disorders in Europe. Out of an initial 4084 participants, 160 were excluded due to excessive missing data—in detail, cases with fewer than 3 completed items/questions were excluded. This resulted in 3924 participants included in the final analysis.

All data were analysed using descriptive statistical methods. Continuous variables were summarized using the mean and standard deviation, as well as the median and interquartile range (1st and 3rd quartiles). Categorical data were reported as absolute and relative frequencies.

Missing data in all tables were reported as random missingness (‘unknown’). Missing information was considered having the same distribution as non-missing information. Therefore, it was assumed that non-missing information was representative for the population.

The survey regarding diagnostic options of first CA detection was based on multiple response options. In order to enable a consistent evaluation, the principle of ranking according to increasing invasiveness of the measurement, from (i) pulse measurement to (ii) wearables, (iii) 12-lead electrocardiogram (ECG) and (iv) Holter- and Tele-ECG, and (v) implantable devices, was applied.

For categorical variables, two-sample tests for the equality of proportions were performed. Two logistic regression models were performed to evaluate the influence of sex and treatment regarding symptoms (model 1) and fear (model 2) of CA with a term for a sex–treatment interaction. Results were reported with P-values, odds ratios (ORs), and their 95% confidence intervals (95% CI). All analyses utilized two-sided P-values, with a threshold of P < 0.05 considered statistically significant.

Calculations were performed using the statistical analysis software R (R Core Team, 2024).

Results

Baseline characteristics

A total of 3924 participants were included in the PULSE survey. Most surveys (n = 3543; 90%) were provided by European residents as shown in Figure 1.

Baseline characteristics, including age, sex, place of residency, educational level, and professional status, are shown in Table 1. The female participation rate was 59%. The largest group of participants (34%) was in the 41–60-year age range, with a higher proportion of females than males (41–60 years old: female 67% vs. 33% male, P < 0.001).

The overall cohort was highly educated, with 52% holding a university degree and 15% working as medical professionals. Moreover, 42% of the participants were retired.

Of all participants, 44% suffered from a previously diagnosed CA and 75% of the participants also knew a person suffering from a CA (Table 1). A CPR course had been completed by 59% of the participants prior to undertaking the survey, ranging from 34% in Italy to 75% in Sweden.

In total, 42% of the participants were aware of organizations like EHRA, ESC, or national societies.

Understanding and perception of cardiac arrhythmias

Regarding the understanding of a CA, 90% of the participants defined a CA as the presence of ‘irregular heartbeats’ (Figure 2A), followed by ‘too fast heart rate’ by 40% and ‘too slow heart rate’ by 28% with multiple answers being acceptable.

The perception of what a CA defines varied across different age groups. Among participants aged ≤20 years, 76% identified a CA as ‘irregular heartbeats,’ compared to 90% of participants aged >40 years. Conversely, 54% of the participants ≤ 40 years perceived a CA as a heart rate that is ‘too fast’ compared to only 36% aged >40 years (P < 0.001).

A false understanding of CA by the definition of ‘irregular blood pressure measurements’ was thought to be the definition of a CA by 10% of participants, while 4% did not know what a CA was and 5% chose the option of another definition.

A total of 82%, 80%, and 75% of participants knew that CA may cause heart failure, stroke, and death, respectively (Figure 2B). The fact that CA may cause no symptoms at all was least known within the survey; 43% of the participants did not know arrhythmias may be asymptomatic. Overall, 47% of medical laypeople vs. 37% of medical professionals and CA participants did not know that arrhythmias could be asymptomatic [OR 1.485 (1.296, 1.701), P < 0.001].

About 9% per cent of the participants were ‘very much afraid’ of CA in general, while 24% were ‘moderately afraid’, 48% were ‘slightly afraid’, and 19% were ‘not at all afraid’.

Overall, men were less likely to be very or moderately afraid than females: 31% vs. 34% [OR 0.863 (0.748, 0.995), P = 0.046].

On the topic of health literacy, 68% of the participants did their own research and 87% found the information helpful. The most frequent tool used to gain information was the internet in 66%. In total, 67% of females and 70% of men have researched information on CA before participating in the PULSE survey [67% vs.70%, OR 1.119 (0.972, 1.288), P = 0.127] and 83% expressed a desire for increased information and awareness about CAs.

Pulse taking and confidence

Taking a pulse with two fingers on the neck or wrist was identified as the correct method for pulse taking by 96% of the participants. Most participants (67%) felt very confident in taking their own and someone else's pulse (Figure 3). Equal level of confidence of taking their own pulse and someone else's pulse was present in 68% of participants.

Females were less confident in taking a pulse as compared to men [72% vs. 81%, OR 1.721 (1.467, 2.025), P = 0.001]. Medical professionals and/or participants with previously diagnosed CA were more confident to take their own pulse [82% vs. 67%, OR 2.217 (1.899, 2.590), P < 0.001] and the pulse of someone else [73% vs. 59%, OR 1.900 (1.633, 2.207), P < 0.001] as compared to a medical layperson. Participants who were aware of institutions like ESC/EHRA knew more frequently how to take their pulse [96% vs. 88%, OR 3.698 (2.763, 5.035), P < 0.001] and were more confident to take someone else's pulse [86% vs. 67%, OR 3.105 (2.613, 3.703), P < 0.001], compared to participants who were unaware of these institutions.

Cardiac resuscitation

In the presented cohort, 59% of participants underwent a prior CPR course (Table 1). Of these, 44% underwent the course within the last 5 years and 20% over 20 years ago (Table 2).

Among the study cohort, 43% felt confident to identify a lifeless person suffering from a cardiac arrest/SCD, while 38% felt confident to start CPR.

Participants who had completed a CPR course were significantly more likely to feel confident in recognizing a lifeless person [56% vs. 24%, OR 4.208 [3.637, 4.878], P < 0.001) and in initiating CPR [55% vs. 15%, OR 7.123 (6.034, 8.440), P < 0.001] compared to those who had never attended a CPR course. Participants who underwent CPR course within the last 5 years were 2.6 times more likely to be confident in the identification of a SCD [69% vs. 47%, OR 2.595 (2.168, 3.111), P < 0.001] and 4.7 times more likely to be confident in starting CPR [75% vs. 39%, OR 4.721 (3.911, 5.715), P < 0.001], compared to participants who undertook their course > 5 years ago.

In total, 43% of male and 42% of female participants felt confident in recognizing a lifeless person [OR 1.129 (0.9869, 1.291), P = 0.083], while men were more likely to be confident in starting CPR as compared to women [40% vs. 37%, OR 1.153 (1.005, 1.323), P = 0.045]. The number of participants feeling confident to start CPR was notably lower among retired participants compared to those who were not retired [31% vs. 44%, OR 0.574 (0.499, 0.660), P < 0.001] and among participants from Southern Europe compared to those from Northern Europe [32% vs. 40%, OR 0.703 (0.600, 0.824), P < 0.001] (Supplementary material online, Table S5).

As compared to participants who never underwent a CPR course, participants who underwent a prior CPR course were more likely to be aware that CA may lead to death [82% vs. 69%, OR 2.082 (1.782, 2.434), P < 0.001], loss of consciousness [83% vs. 69%, OR 2.172 (1.858, 2.5042), P < 0.001], and more frequently knew a person with CA [79% vs. 69%, OR 1.619 (1.392, 1.883), P < 0.001].

Participants who knew institutions like ESC/EHRA were more likely to be confident in recognizing a lifeless person [57% vs. 33%, OR 2.709 (2.363, 3.109), P < 0.001] and to start CPR [52% vs. 29%, OR 2.661 (2.317, 3.059), P < 0.001].

A total of 86% of the cohort believed it was important to join a gym that provides a defibrillator. Participants who knew institutions like ESC/EHRA were more interested to join a gym with a defibrillator [91% vs. 81%, OR 2.397 (1.948, 2.967), P < 0.001].

Participants with a previously diagnosed cardiac arrhythmia

Of the 1747 CA participants, 55% were female and 45% male. The rates of CA participants receiving treatment were similar among sexes [81% male vs. 79% female, OR 1.112 (0.878, 1.413), P = 0.413].

In total, 94% of the CA participants perceived their arrhythmia at least slightly threatening (see Supplementary material online, Table S1).

Most participants’ (58%) normal daily activity was not affected by their CA, reporting mild symptoms. Impairment of normal daily activity with severe symptoms was present in 25%, and disabling daily symptoms with discontinuation of normal daily activity was reported by 3.3% of participants (see Supplementary material online, Table S1).

Overall, 14% were asymptomatic. Male CA participants were more often asymptomatic than female CA participants: 20% vs. 9%, OR 2.190 (1.553, 3.089), P < 0.001. A sex–treatment interaction on symptom presence showed no significance indicating that male CA participants receiving treatment were not more likely to be symptomatic than those not receiving treatment (interaction effect P = 0.056) (Figure 4A).

Male CA participants were numerically, but not significantly less afraid than female participants [OR of sex category adjusted to receiving treatment: 0.648 (0.522, 0.803), P = 0.076 of sex category main effect], regardless of whether they were under arrhythmia treatment or not as the interaction between sex category and treatment on fear of CA was not significant (interaction effect P = 0.860) (Figure 4B). Being under arrhythmia treatment had no effect on the fear of CA [OR of treatment adjusted to female sex 1.028 (0.752, 1.406), P = 0.86 of treatment main effect] (Figure 4B).

Cardiac arrhythmia participants had more often researched information on the topic compared to healthy participants [89% vs. 48%, OR 8.570 (7.212, 10.227), P < 0.001].

Results of health literacy questions are shown in Supplementary material online, Table S2. Most CA participants found it easy to understand and follow doctor’s or pharmacist’s instructions (see Supplementary material online, Table S2). The exception was judging advantages and disadvantages of different treatment options, which was difficult to understand for 49% (very difficult 8%, difficult 49%, easy 36%, and very easy 7%).

Cardiac arrhythmia participants’ arrhythmias were most often diagnosed by outpatient cardiologists (26%), in-hospital cardiologists (22%), and family doctors (22%). In total, 10% of CA participants used a wearable device to detect their arrhythmia for the first time, of which 6% used a smartwatch with an ECG function (Table 3; Supplementary material online, Table S3). Explanations about the disease were mostly given by outpatient cardiologists (38%), in-hospital cardiologists (26%), and family doctors (15%).

Decisions regarding specific CA therapy were most commonly made by outpatient (35%) or in-hospital cardiologists (30%). Shared decision-making processes were reported to be low in the PULSE survey: 13% of CA participants engaged in a shared decision-making with their cardiologist; in 4%, shared decision-making included a network of doctors that communicated with each other; and in 1%, the decision-making involved the family doctor (Graphical Abstract). Of the complete cohort, 6% of CA participants independently made their treatment decision.

The CAs were first detected using a regular 12-lead ECG at a doctor's practice or hospital in 47% of cases, through a Holter- or Tele-ECG in 16%, via pulse measurement in 24%, via wearable devices in 10%, and via implantable cardiac devices in 3% of cases (Table 3).

Among all CA participants, 79% reported self-monitoring their heart rhythm. The most commonly used devices for self-monitoring were smartwatch wearables (30%), followed by home blood pressure and pulse monitors (29%) and other wearables (6%) (Supplementary material online, Table S3).

Discussion

The major findings of this study are as follows:

1. Fear of CA was expressed by the majority of the PULSE survey participants, particularly females. Knowledge of CA varied by age group, indicating different perceptions and levels of awareness across demographics. However, the study population indicated high confidence in basic educational tasks like pulse taking and were interested in receiving more information.

2. Most participants lacked confidence in their ability to evaluate and initiate CPR, especially Southern Europeans and retired participants. Familiarity with organizations like EHRA/ESC as well as participation in a recent CPR course increased the number of confident participants recognizing SCD and starting CPR.

3. Cardiac arrhythmia significantly reduced quality of life. One-third of CA participants had severe to disabling symptoms, with females exhibiting more symptoms despite receiving similar treatment rates as males. Many CA participants struggled to assess treatment options, and shared decision-making was rarely practiced.

4. Wearable devices were used by a third of CA participants in the PULSE survey, which therefore appear to be valuable detection tools and, even more so, key devices for self-monitoring within the general population.

The PULSE survey is the first to investigate the self-involvement of the general population across Europe in relation to heart rhythm disorders. Participants showed a wide range of diversity including different nationalities, demographics, and educational backgrounds, representing a cross-section of the population. The majority of the PULSE survey participants expressed fear of CA and expressed a desire for more information. It is well understood that conditions, such as CA and anxiety/depression—occurring coincidentally or separately—are associated with a great socio-economic burden for societies.⁶ The desire of the general population for more information highlights a clear need to increase awareness and enhance education on the topic.⁷

The results of the PULSE survey not only revealed the general population's basic understanding of CA but also identified the specific knowledge gaps therein that could help to develop and structure future educational programmes and awareness campaigns.

Education and awareness

The major gaps of knowledge within the general population were unawareness on recognizing SCD, the lack of confidence to initiate CPR, and the definition of CA.

Understanding of CA varied by age group, indicating different perceptions and levels of awareness across demographics. For example, in the PULSE survey, younger participants perceived a CA more often as a fast heart rate and less often as irregular heartbeats. Interestingly, this perception on CA mirrored the prevalence of different types of CA among age groups. In general, classic supraventricular tachycardias, such as AV nodal re-entry and AV re-entry tachycardia, are more frequent in younger individuals, while AF rates increase with age.^1,8

The PULSE survey highlighted that awareness of health institutions like EHRA/ESC, as well as participation in structured educational programmes, such as recent CPR courses, increased not only knowledge but also confidence in participants to take action. However, confidence in recognizing SCD and initiation of CPR was low in the overall study population.

The rate of participation in a CPR course was lower in the general population questioned via the PULSE survey, as compared to other reports. In a web survey performed in Sweden, 76% of non-healthcare professionals had participated in a CPR course at some time in life, 58% during the previous 5 years,⁹ as compared to 59% and 44% in the PULSE survey, respectively. Of note, in countries such as Sweden, ongoing large-scale community CPR training programmes have been launched.¹⁰ However, our findings indicate that these programmes are not yet widely established across Europe. Even where they are available, certain groups—such as the elderly, individuals of foreign origin, and those not in the workforce—may still be underserved by CPR training initiatives.¹⁰ This was also shown in the PULSE survey as retired participants showed lower confidence in starting CPR. Bystander CPR rates increased tremendously in Denmark from 20% in 2001 to 77% in 2018 due to several central initiatives, including mandatory CPR courses in all primary schools and when applying for a driver's license.^11,12 This mass education resulted in a significant increase in the likelihood of bystander CPR performance with just a 5% rise in CPR course participation.¹¹

Since there are measurably effective training programmes, these should urgently be expanded. Additionally, there is a need for more political attention and involvement.

Nevertheless, the study population showed high knowledge and confidence in self- and non-self-pulse taking. This shows that simple tasks and measurements of body's physiological function can easily be understood and taught by awareness campaigns to the general population and again highlights the general population's willingness to engage.

Another study examined an awareness campaign aimed at detecting early AF, in which pharmacists were trained to take pulses and referred participants to a physician if irregularities were found.¹³ The authors concluded that an inter-professional relationship was crucial in success and may contribute to greater outreach of awareness campaigns.¹³ However, awareness about CA may be overestimated in this study, considering that several data indicate a more informed population: 52% held a university degree and the most frequent tool used to gain information was the internet in 66% of cases.

Malhotra et al.¹⁴ studied the global digital impact of World Heart Day and Atrial Fibrillation Awareness Month celebrated annually in September. The hashtags #AfibMonth and #AfibAwarenessMonth created 1.62 million and 4.42 million impressions on social media, which was less than the #WorldHeartDay, respectively.¹⁴ This shows that awareness of heart health has a broader global reach than a dedicated campaign focused on CA. The authors suggested that enhanced planning and collaboration are essential to expand the impact of CA awareness initiatives.¹⁴ A focused arrhythmia awareness campaign centred on a specific day or cause may deliver a clearer, more impactful message compared to a prolonged effort that may risk diluting its focus.

Sex-related differences

Sex-related differences in the epidemiology, pathophysiology, clinical presentation, and prognosis of CA have been reported before.¹ Notably, these differences include the referral of fewer women for specific CA treatments, such as catheter ablation with only 15–25% of referrals involving female patients.^15–18 Of note, in the PULSE survey, the female participation rate (59%) and the proportion of CA participants who were female (55%) were higher than those reported in other studies reporting on CA. Women are frequently underrepresented in large clinical trials investigating, for example, AF, the most common sustained CA. In randomized, multicentre AF treatment trials such as the CABANA study,¹⁹ only 37% of patients included were female, 36% in the ARTESIA²⁰ study, and 29% in the EARLY-AF study.²¹ In fact, Gong et al.²² reported that female participation in 598 major cardiovascular randomized trials increased over time from 21 to 33%. However, female participation in arrhythmia trials was only 28%, which remained to be lower than the relative proportion in the disease population.²²

Despite finding no differences in treatment rates between both sex categories in the PULSE survey, females remained to be more symptomatic. This discrepancy could be attributed to two factors: (i) women may not receive the same quality of CA-specific treatment, as previously observed, or (ii) women's perceptions of treatment success and outcomes may differ.

These findings suggest that a more holistic approach to CA management is necessary to address sex-specific needs and improve outcomes for female patients.

Initiatives aimed at closing the sex-related gap are essential not only to ensure that trial results are generalizable to a broader population but also to guarantee that women receive equitable care.

Additionally, anxiety among female participants was numerically higher as compared to males in our study. It is well understood that AF and other CA are associated with mental health issues such as anxiety and depression.^23–25 Interestingly, psychological interventions and specific CA treatments are known to improve quality of life and reduce healthcare costs and consumption.^26–29 Furthermore, in patients scheduled for AF ablation, a pre-procedural virtual reality educational video improved information delivery, enhanced procedure-related knowledge, and reduced anxiety about the procedure.³⁰ Yet, both—sex-related disparities and the overall treatment options for individuals with anxiety and presence of CA—remain neglected. Addressing these gaps is essential to improve care and support for affected populations.

More resources should be allocated to patient education, patient-specific platforms, and physician communication training. In this context, artificial intelligence–powered chat tools may offer valuable opportunities for enhancing patient education.³¹ Furthermore, the ESC recently published the 2024 AF clinical practice guidelines for patients summarizing the key points.⁷

Shared decision-making

Furthermore, the PULSE survey showed that it was difficult for CA participants to understand the advantages and disadvantages of specific treatment options. The PULSE survey results indicate that shared decision-making processes involving a network of healthcare professionals, as recommended by current guidelines,¹ have not been widely implemented. Only 4% of CA participants reported experiencing this approach. The 2024 ESC guidelines for management of AF give out class IC recommendations for both education directed to patients, family members, caregivers, and healthcare professionals to optimize shared decision-making as well as access to patient-centred management according to the AF-CARE principles by all patients.¹ Yet, the PULSE survey showed that these recommendations may not have found their way into clinical routine and additional efforts are urgently needed to ensure that guidelines are effectively integrated into clinical practice and decision-making.

Wearables and rhythm monitoring

Hundreds of millions of consumers are currently using wearable devices like smartwatches, incorporating marketing strategies to promote their health features. However, a wide gap between advances in technology and integration of data coming from wearables for clinical decision-making as well as their implementation into existing clinical working tools remains.^32,33 Such digital devices can indirectly or directly measure heart rate and/or rhythm using either photoplethysmography or ECG, respectively.^5,32,34

Self-monitoring of heart rhythm with a smartwatch was as high as one third of the CA participants of the PULSE survey. The findings of the PULSE survey support and extend prior evidence gained in this line of work. In the WATCH-IT study, which included a 20-question electronic survey, roughly half of participants reported active use of a consumer wearable devices.³⁵ Comparable to our findings, a known AF diagnosis and cardiology patient status were associated with a greater likelihood of wearable device use.³⁵ However, it has been reported that the ones at risk, e.g. elderly individuals or heart failure patients, use wearable devices less.³⁵

Smartphone app-based heart rhythm and symptom monitoring approaches integrated in structured on-demand AF care pathway, including post-ablation patients, have been shown to be possible, scalable, and positively perceived by patients with diagnosed CA.^36–40

Additionally, the FDA has recently accepted the use of a specific smartwatch for patient's follow-up in AF catheter ablation studies.⁴¹

This is the first digital health technology to qualify under the agency's medical device development tool programme for providing a non-invasive means of checking AF burden estimates within clinical studies.⁴¹

In the PULSE survey, 1 out of 10 CA was first detected using a smartwatch, indicating that consumer wearables have already found their way into clinical diagnostics in the general population. The accuracy of ECG smartwatch algorithms to detect AF showed a sensitivity and specificity of 58–85% and 69–79% depending on the wearable device with occurrence of inconclusive tracings in 17–26%, respectively.⁴² However, a physician's manual review adjudicated correct rhythms in 99% of ECG tracings, necessitating manual review in approximately one-fourth of cases.⁴² Additionally, these algorithms, for now, are limited to the diagnosis of AF, but other CA can be identified in wearable ECGs upon review by a physician.⁴³ It is therefore crucial to define optimal care for individuals with incidental arrhythmias detected by wearables, including AF and other arrhythmias. These findings of the PULSE survey further emphasize the key points outlined in the EHRA practical guide on ‘how to use digital devices’: new and adapted infrastructures to accommodate new processes and increased data loads as well as digital CA management pathways, including the people's engagement are urgently required.⁵

Limitations

The present study yields some limitations. The main limitation is that the study design is observational in nature. A fair number of participants either suffered from a CA or knew a person with CA. Therefore, a selection and sample bias cannot be ruled out as the PULSE survey was shared on social media and via newsletter of cardiac health institutions, which could possibly have led to participation of more interested and involved individuals. Also, awareness about CA may be overestimated in this study, considering that several data indicate a more educated population.

Other limitations include response bias as participants may not have answered truthfully due to, for example, lack of understanding. The closed-ended questions in the PULSE survey may have restricted the depth of responses and limited nuanced understanding of complex issues. Lastly, there was no information available from the clinical data or healthcare providers for individuals who suffered from a CA.

Conclusion

Significant knowledge gaps regarding CA exist in the general population. Targeted educational initiatives could be a viable tool to enhance public confidence in detecting and managing arrhythmias, particularly for women, who experience greater fear and symptoms despite similar treatment rates. Usage of wearable devices, including those designed for arrhythmia detection, was prevalent in participants of the PULSE survey, reflecting their growing role in consumer health and arrhythmia monitoring.

Furthermore, the PULSE survey indicates that current guideline recommendations of shared decision-making may require better integration into clinical practice.

Supplementary material

Supplementary material is available at Europace online.

Acknowledgements

The authors sincerely appreciate Lauren Tapp from the ESC for her exceptional coordination and dedicated involvement throughout the process. Additionally, the authors thank the EHRA patient committee, including the patient representative Sharon MacDonald, and EHRA SIC committee for the assistance in translating the survey to all 12 languages and distributing the PULSE survey in Europe. Also, we thank the German Heart Foundation (Deutsche Herzstiftung) for distributing the survey.

Funding

None declared.

Data availability

All relevant data to this publication are incorporated into the article and its online Supplementary material.

References

Author notes