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Improving the quality of life and reducing sudden cardiac death by limiting the impact of heart rhythm disturbances.
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There are differences in patient reported experiences after a catheter ablation based on whether the procedure was a supraventricular tachycardia (SVT) ablation or an atrial fibrillation (AF) ablation. The efficacy rates for SVT ablations are reported to be at least 95%;1,2 whereas with AF ablation, the efficacy rates range from 45- 77% depending on factors such as type of AF, volume of AF ablation procedures at the institution, and experience of the electrophysiologist.3,4 Patients undergoing an AF ablation often need one or more procedures to obtain a successful outcome.3,4 Based on patient reports, SVT patients feel fairly well after an ablation with minimal or rare symptoms post-ablation.1,2 If symptoms do occur after the ablation, it is usually very short-lived palpitations that go away within 4-5 weeks.2,5 Patients with SVT may report mild post-ablation fatigue, which typically lasts no longer than 1-2 days.2,5 With AF patients, however, the post ablation recovery process is very different. 6
Outcomes for patients undergoing an AF ablation vary greatly.3 Rare patients have no further episodes and their medications can be reduced or discontinued. It is more typical that patients must manage the emotional and physical consequences of repeated episodes of atrial arrhythmias (more AF, atrial flutter, or atrial tachycardia) that occur during the first 3-6 months after the ablation, including frequent medication increases or changes, as well as cardioversions, if the medications do not control the atrial arrhythmias. The patient symptoms, concerns, fears, and experiences post-ablation are very similar to what has been described by patients struggling to live with AF prior to ablation.5,7-12 Additionally, prolonged debilitating fatigue post-AF ablation was reported by subjects in our recent pilot study (NIH P30NR014139) examining the post AF ablation experience in subjects ages 50-77 yrs.6 Fatigue post-AF ablation was reported as much more severe than that experienced after AF episodes pre-ablation. Described as nearly incapacitating, fatigue was reported by 65% of subjects at 1 month post-AF ablation, and continued fatigue reported at 3 months in 50% of subjects.6 Also, 40% of sample reported inability to return to even part-time work within 3 weeks due to overwhelming fatigue.6 This prolonged fatigue differs greatly from ablation outcomes for patients with SVT and other types of arrhythmias where patients typically return to full time work in 1-3 days after the procedure.2,5 Fatigue of this severity and duration has not previously been reported in post-AF ablation patients. What we do not know is why the recovery from AF ablation seems so challenging to patients and when patients feel that improvement occurs. We do know that when AF patients are educated about their disease with realistic expectations about treatment plans, they report fewer symptoms with less emotional distress.9 Therefore, we were interested in identifying the most challenging time points during the first six months after AF ablation, to plan targeted interventions.
Patients living with SVT or AF report experiencing a sense of isolation, limitations in their activities of daily life and social activities; increased anxiety, depression, and a sense of powerlessness due to the sporadic episodes of these arrhythmias, and frustration and anger over the fact that providers frequently misinterpret their symptoms leading to misdiagnosis and delayed access to care.5,7-12 Deaton and colleagues reported that patients with symptomatic AF awaiting an implantable atrial defibrillator procedure noted their symptoms were often minimized. They described being misdiagnosed as having anxiety attacks or other psychiatric disorders which delayed their referral for treatment.11 Patients have noted their symptoms are more severe and disabling than providers perceive.5, 7-12 Patients with AF have reported feeling like they are the “only one” they know with AF, which may seem incongruous to providers since AF is the most common arrhythmia seen clinically.5,7,12 Patients with both SVT and AF have reported emotional distress when trying to rule out causative factors or develop strategies to stop episodes from occurring, only to find their strategies were not consistently successful. 5,8-12 Others have reported that patients have stopped driving altogether due to the fear of having an episode while behind the wheel.5,7
Researchers have reported patients lack an understanding of the natural history of AF and treatment options, especially the importance of anticoagulation.5-15 Koponen and colleagues found that patients undergoing cardioversion for AF had frequent misunderstandings about that treatment.16 At three months after cardioversion, 27% of patients believed they had been “cured” of AF.16 If cardioversion had converted patients to normal sinus rhythm, patients reported thinking they were “cured” of AF and normal rhythm would continue forever; and if they required medications to maintain sinus rhythm, they felt that they would no longer have any AF while on medication.16 This leads to difficulties in making decisions about treatment options because patients have noted they are unprepared to weigh options or provided incorrect or minimized expectations of treatment outcomes.6,9,11-16
Patients have reported spending an enormous amount of time searching online for information about AF because information from their providers has proven to be less than adequate.6,9 Discouraged, and frustrated, they have sought out invasive ablation treatment as a way to improve their quality of life to have a “cure” from the repeated, sporadic episodes of AF. Differences in provider and AF patient expectations of AF ablation results were also noted.6 Providers’ expectations realistically focus on improvement of quality of life and reduced patient symptoms, accepting that ablation is currently not a “cure” for AF. Patients report their expectations of ablation as a way to achieve no further AF, a “cure” for the disease, and the ability to completely discontinue oral anticoagulation drugs.6
As researchers begin to test interventions to improve patient recovery following an AF ablation, there are steps we can take to help improve patients’ experience of ablation recovery.6, 9 Goals for improving patient outcomes post-AF ablation should include realistic information about the trajectory of AF and individualized expectations about efficacy rates for their AF ablation procedure. Also important is management of patient expectations of increased symptoms and atrial arrhythmia episodes during the first 3-6 months; reassurance about prolonged fatigue and gradual return to work, resumption of normal activities and exercise routine; explanation of the prevalence of discouragement, depression, and anxiety; teaching patients which provider to contact for what types of symptoms; and when to seek urgent care.
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