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What do our patients think they know about atrial fibrillation? … Is that asking the right question?
  1. Prashant Dattatraya Bhave
  1. Correspondence to Dr Prashant Dattatraya Bhave, Cardiology Section, Wake Forest Baptist Medical Center, 1 Medical Center Drive, Winston-Salem, NC 27157, USA; pdbhave{at}gmail.com

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In their Heart publication, Kaufman et al 1 analysed survey data examining patients’ self-reported understanding of various elements of care regarding their atrial fibrillation (AF). The authors used a cohort of patients recently diagnosed with AF from a substudy of the Outcomes Registry for Better Informed Treatment of Atrial Fibrillation (ORBIT) II registry. The authors found that on initial survey, about half of patients reported a high understanding of various elements of AF care, such as the benefits of taking blood thinner. Exceptions included ‘role of rhythm control’ (for which 70% of patients reported a high understanding) and ‘benefits of left atrial appendage closure’ (for which only 8% of patients reported a high understanding). Overall, patient self-report of understanding of various AF treatment modalities did improve somewhat between baseline and 6-month follow-up; however, there was also some regression—for instance, 15%–20% of patients who reported high understanding of the benefits of oral anticoagulation at baseline reported a downgrade in that level of understanding 6 months later. With the exception of catheter ablation, patients' self-perceived understanding of a given modality of AF care did not correlate to the frequency of use of that modality in their care.

This manuscript raises a number of important issues that are pertinent to the way that we care for patients with any chronic disease, not just AF.

First—do patients' self-assessment of their understanding of their disease bear any correlation to their actual comprehension of the disease process and its management?

Second—what strategies can we employ to improve our patients’ understanding of their disease?

Third—will better patient understanding of their disease lead to an improvement in the healthcare that they receive?

Kaufman and colleagues nicely synthesise data exploring patients' self-assessments of their understanding of topics related to their AF care. However, the question remains… Is this self-assessment accurate? After obtaining survey responses, it would have been very interesting to administer a brief knowledge test to each subject to help make a comparison. The available research within the field of medicine addressing the correlation of self-assessment to actual knowledge includes health sciences students and physicians. The evidence strongly suggests that both students and physicians are quite poor at self-assessment.2 3 Interestingly, among physicians, those who were the least skilled and those who were the most confident had the worst self-insight. I have no reason to doubt that patients would encounter the same types of difficulties when asked to rate their own knowledge level.

With that being said, most practitioners would acknowledge there are serious gaps and flaws in the way that we educate our patients with AF. Generally speaking, a new diagnosis of AF can be overwhelming.4 Inevitably, patients will be bombarded at their initial clinic visit with a tremendous amount of new information. They will hear about ‘rate versus rhythm control’ and have to help decide which pathway to choose. If they choose rhythm control, they will then be presented with an even more complex menu of options that includes more medical jargons like ‘AADs’ and/or ‘cardioversion’ and/or ‘ablation’. Next they will face the particularly challenging decision of whether or not to start a blood thinner, and with it the prospect of chronically taking a potentially costly medicine that increases their likelihood of bleeding and does not make them feel any better. By the time they receive an explanation of left atrial appendage occlusion, the patients are already fully saturated with new information. To think that anyone can process all of this in a 20–30 minute clinic visit is wholly unrealistic.

What are the potential steps forward in improving patients' understanding of their disease process? As with any type of learning, repetition and serial assessments are essential. The barriers to patient education are myriad—perhaps topping the list is the medical equivalent of ‘fake news’: misinformation from sources such as television commercials, well-meaning friends and relatives, and unvetted websites. Frequent physician reinforcement of accurate information can help curb the influence of unreliable sources.

Particularly in the time period immediately following AF diagnosis, closely spaced appointments with physicians and physician extenders have the potential to be very high yield. Focused discussions could be tailored to fill in knowledge gaps or correct misperceptions, which could potentially be identified through written assessments. The use of a multidisciplinary approach to provide integrated AF care can be a powerful tool to provide education and empower patients to take ownership of their arrhythmia care. I also believe—selfishly perhaps—that at least one visit with a heart rhythm specialist would help patients understand the full menu of therapeutic options available to them.

While we might all agree that patient education is important, there may be some disagreement on what the ultimate goal of all this patient education is. Are we seeking higher patient satisfaction or are we aspiring to a higher degree of compliance with published guidelines? Let’s again take the example of AF and oral anticoagulation. Looking strictly at the statistics, we are not hitting our targets in terms of AF-related thromboembolism prevention. In most published series, only about 60% of patients with a CHA2DS2-VASc score of ≥2 are prescribed oral anticoagulation.5 6 Recent work examining the persistence of therapy in patients with AF who are prescribed a novel oral anticoagulant agent showed that at 1 year only 30%–50% remained on therapy.7 The operative question is: are we failing our patients or are our patients making well-informed decisions about their own care (taking into account their own values and personal finances) that happen to frequently diverge from the guidelines? My bias is to suspect that patients are not being adequately educated about the indications for oral anticoagulation. Before jumping to conclusions, however, let us consider the results of a recent study examining the impact of decision aides on oral anticoagulant prescription; when physicians were asked to view themselves as a patient with AF, they were less likely to prescribe an anticoagulant to themselves as compared with a hypothetical patient with identical stroke risk factors.8 Some self-reflection on the part of the treating physician is needed—we need to recognise when we are asking a patient to do something that we would not ourselves do. Ultimately, I think that the use of a shared decision model with a well-educated patient is most likely to result in clinical management that balances medical necessity and the non-medical realities of the patient’s particular situation. This will bring about the best outcomes in terms of patient satisfaction and autonomy, though it might still fall short in relation to guideline-based metrics.

References

Footnotes

  • Competing interests None declared.

  • Provenance and peer review Commissioned; internally peer reviewed.

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