Managing Health Risks: A Wishlist From Patients With Atrial Fibrillation

Globally, atrial fibrillation (AF) is the most common cardiac arrhythmia,¹ with a prevalence rate as high as 3% in Western populations in patients aged older than 20 years. In addition to its symptom burden, it further carries risk for peripheral embolism, stroke (unfortunately sometimes the first symptom), heart failure, and death.²

Some risk factors for incident or worsening AF are nonmodifiable (eg, older age), but many are modifiable. The latter category includes alcohol consumption, physical inactivity, obesity, hypertension, diabetes mellitus, hyperglycemia, and hyperlipidemia. As such, the burden of AF and its comorbidities generally can be modified by changing lifestyle factors. Therefore, active patient participation is essential to reducing risk for AF.

Evidence continues to accumulate that active patient participation can decrease the symptom burden and morbidity of AF. Losing a minimum 10% of body weight, for example, may sometimes eliminate the need for rhythm control medication or ablation.³ Multiple studies of aerobic exercise found it to reduce risk for new-onset AF,² and likely also to decrease AF symptom severity and recurrences.⁴ Meanwhile, alcohol consumption is a well-known risk for incident AF, even with exposure as low as 1 drink per day⁵, and patients who drank alcohol who abstained from previous intake of 10 drinks or more per week demonstrated fewer recurrences, and longer time to recurrence, of AF over 6 months.⁶

Yet patients may have difficulty enacting the changes needed to realize those benefits. Systematic research is only beginning to uncover the patient experience of navigating care for AF, their understanding of their AF risks, the factors that may assist them in reducing their risks and comorbidity burden, barriers to their doing so, and what can address those barriers effectively. What follows is an overview of existing research into those patients’ perspectives.

Obstacles to Patient Engagement

A review of qualitative studies examining patients’ experiences of care for AF⁷ highlighted underlying challenges. Patients often lack knowledge of their condition, find it difficult to acquire and retain such knowledge, and experience high emotional burden in self-managing their symptoms.

Difficulty finding and applying relevant information is a common theme. Educational materials commonly available to patients are more likely to contain general-purpose information on cardiovascular disease than on AF specifically.⁸ Those materials that do deal with AF also are more likely to emphasize treatment considerations (eg, anticoagulant medication) than risk factor management.

As with educational materials, research examining patients’ comprehension of those materials similarly underemphasizes AF risks and comorbidities. Regardless, patients may not benefit enough from the available materials on either treatment options or downstream health risks. Analysis of data from the SATELLITE study revealed broadly insufficient understanding among patients about their treatment options for AF.⁹ Between 13% and 30% of patients are reported to be unsure of whether AF carries risk for stroke. This may in fact overestimate patient knowledge, since patients may inflate self-assessments of knowledge, relative to objectively measured understanding.

If patients do not find AF-relevant information through their clinicians or through refereed educational materials, they are likely to seek what is available on the internet, including on social media platforms. The quality of such information varies widely: misinformation regarding noncommunicable diseases, such as diabetes and hypertension, is relatively common on social media.¹⁰ It has not been reported whether online misinformation systematically hampers patients’ understanding of their AF risk factors, or whether patients who have relied on non-refereed online information ultimately experience relatively poor outcomes. Future research may answer these questions, thus improving understanding of patient experiences in AF.

Patient Perspectives

Systematic information on patient perspectives regarding their AF risk management is limited to small, geographically constrained studies. Ferguson and colleagues conducted qualitative interviews with patients, clinicians, and other expert stakeholders across 2 Australian tertiary hospitals.⁸ Patients confirmed a desire for personalized education specific to AF, including during clinical encounters. They also highlighted the importance of family engagement in the education process, and the role of family structure in the patient’s risk management plan. Patients also supported applying community-based resources, such as peer support and group events, to their experience.

In addition, patients expressed a strong interest in multimodal education, including individually preferred digital delivery tools, such as mobile applications, audiovisual communications, and integration with social media platforms. Patients and clinical experts both expressed that timely availability of well-tailored information likely is crucial to combatting misinformation.

Klavebäck and colleagues¹¹ conducted focus group discussions with 16 patients in Stockholm, Sweden, with an emphasis on their opinions and wishes for digital self-management tools to manage AF-related comorbidity. They echoed a strong wish for personalized education, customized to their background and level of relevant knowledge. They also expressed a particular interest in actionable, practical advice and instructions for managing risks and comorbidities. Here, they highlighted a distinction: although they appreciated help in managing their lifestyles, they often did not point to a deficit in basic knowledge regarding diet, reduced alcohol consumption, or the notion of exercising more. Rather, they wanted assistance from a digital tool to make such changes sustainable in their busy lives.

In the context of digital tools, patients also desired consistent communications, with a focus on empowering messages and motivating, nonjudgmental feedback. Finally, patients in both these studies suggested that, even though some patients likely prefer simple, immediately actionable information, others might benefit further from being able to access more detailed information, particularly when using a digital tool.

The Potential of Digital Tools

The qualitative studies by Klavebäck, et al, and Ferguson, et al, demonstrate clear interest in digital tools to assist in AF risk management, both on the part of clinicians and that of patients. Indeed, a rapidly growing body of research is exploring patient uptake, engagement, and outcomes using digital health tools for a variety of uses and medical indications. Those indications include AF comorbidities and risk factors. For example, a systematic review¹² of 10 randomized, controlled trials of communications-based technology (eg, text or telephone messages) to promote exercise found statistically significant improvement in adherence to exercise regimens in 7 trials. Three trials reported lack of group difference across longer-term follow-up. A narrative review of clinical trials testing digital applications to manage hypertension concluded that such technology showed potential to help patients control blood pressure, as part of a multimodal approach.¹³ Both the digital products and the trial methods were heterogeneous; the examined trials were judged to yield moderate strength of evidence. The authors also noted that such tools ultimately will require improved integration into health care systems.

AF-specific digital interventions and applications also exist, if in smaller numbers; rigorous research to evaluate them is only beginning. After an 8-week, virtual AF self-management program conducted early in the COVID-19 pandemic,¹⁴ attendees of 8 hour-long information sessions, over 4 weeks, demonstrated improved adherence to self-monitoring of heart rate and blood pressure. They also grew more confident they could follow their self-care recommendations, identify AF-relevant symptoms, and determine when to seek emergency care, compared to participants who did not attend the sessions. However, the program did not increase AF-specific quality of life and there was no follow-up beyond the brief study period. Turchioe and colleagues¹⁵ conducted a 2020 review of freely available mobile applications intended for detection of management of AF. Most were oriented mainly toward detection of heart rate abnormality. By contrast, few applications provided functionality to support health-related behavioral change, action reminders, or self-care recommendations.

Such functionalities will likely be crucial to maintaining patient/user engagement in future AF-management digital tools. Research into other digital health interventions may offer parallels. For example, a rapid review¹⁶ of studies reported on factors that could enhance user engagement with digital weight management tools. Similarly, to the patients with AF interviewed by Klavebäck, et al, and Ferguson, et al, these users expressed that they desired personalized information, availability of motivating feedback and encouragement, inclusion of social or communal support, and rapid access to relevant information.

In short, those users prioritized a rich variety of features beyond the ability to monitor their body weight (for which a bathroom scale would suffice). It appears likely that patients with AF will ask for, and benefit from, similar experiences via digital tools intended for them.

In fact, as these findings make clear, what patients with AF desire from digital interventions is not much different from what they want from their care experience with human clinicians. They request care centered on their individual clinical needs, education customized to their current level of understanding and desired level of detail, sources of guidance and encouragement, and access to other people who understand their experience. If they gain these resources, the payoff may well be better health and longer life.

This article originally appeared on The Cardiology Advisor