Elsevier

Heart & Lung

Volume 32, Issue 5, September–October 2003, Pages 291-299
Heart & Lung

Issues in cardiovascular nursing
Patient experiences with atrial fibrillation and treatment with implantable atrial defibrillation therapy

https://doi.org/10.1016/S0147-9563(03)00074-8Get rights and content

Abstract

Background

Patient perspectives about their illness experiences, symptoms, and treatment are essential aspects of quality of life and provide direction for patient and provider decision making regarding innovative therapies such as implantable devices for arrhythmia.

Purpose

The purpose of this qualitative study was to describe: 1) the experience of patients living with symptomatic, drug-refractory atrial fibrillation (AF) and 2) patient experiences and acceptance of treatment with the implantable cardioverter defibrillator (ICD) with atrial therapies (ICD-AT) including ventricular and atrial defibrillation therapy.

Participants

Subjects were 3 women and 8 men, 35 to 80 years of age, who received the Medtronic Jewel AF 7250 ICD-AT as therapy for recurrent, drug-refractory AF, had a history of AF for 3 to 20 years and had experienced multiple treatment modalities including frequent external cardioversion in an effort to control their AF.

Methods

A semi-structured interview addressed experiences of symptoms and prior treatment for AF and experiences, concerns, and perceived benefits of the ICD-AT. Interviews were recorded and transcribed verbatim. Narratives were coded and categorized using Atlas Ti® software. Qualitative interpretive analysis methods were used to identify key themes.

Results

Before ICD-AT, patient themes focused on AF that was: 1) misdiagnosed, minimized, and poorly treated; 2) distressful because of frequent and intense AF symptoms (fatigue, dizziness, shortness of breath, and anxiety) before ICD-AT; 3) limiting of activities of daily living; 4) associated with distress from enduring previous treatment; and 5) associated with the continuous pursuit of successful treatment and maintenance of normalcy. Decision making regarding ICD-AT therapy included weighing symptom or treatment distress versus anticipated risks or benefits, hope for better outcomes, and lack of options. After ICD-AT, themes included positive perceptions of the device because of AF symptom relief, ability to resume normalcy, and medication tolerance; incorporation of shock experiences into life routines; and patient suggestions regarding preparation and social support.

Implications

Symptoms of AF have a major negative impact on overall quality of life. Treatment with the ICD-AT confers a sense of security and reduced symptom distress. Greater provider attention to patient preparation and facilitating social support are important for future ICD-AT patient care.

Introduction

Advances in medical technology occur at a rapid pace, offering cardiovascular patients new and innovative therapies to treat or ameliorate illness. Innovative therapies, however, may also create new challenges for patients such as recovery from a surgical procedure, side effects from medications, new symptoms, or physical and psychological adjustment to an implanted device. Many therapies also require patients' active involvement in administration and monitoring. For the most part, patients and their families must make decisions about risks, benefits, and investment of resources (e.g., time, money, and assistance from others) when making decisions about acceptable therapy. The level of discomfort or distress from illness may have a powerful effect on patient decisions about treatment; thus it is important to understand patients' perspectives of their experiences with illness and treatment.

Atrial fibrillation (AF) is a dysrhythmia that affects approximately 2.2 million persons in the United States, with incidence increasing with older age.1, 2 Because AF is a chaotic cardiac rhythm, it affects cardiac output and the normal movement of blood through the cardiac chambers; causes left ventricular dysfunction; and fosters the development of thrombi and potential emboli in the fibrillating atria. Risk for stroke is increased in patients with AF (annual rate 5-7%)1, and is a leading cause of morbidity and mortality in US adults over 65 years of age. AF also contributes to heart failure progression as well as increased mortality in patients with left ventricular systolic dysfunction.3 Intermittent or paroxysmal AF is characterized by repeated episodes of AF that may either self-terminate or require repeated treatment such as external cardioversion to terminate. Restoration of normal sinus rhythm improves quality of life (QOL) and prevents worsening of heart failure.3, 4, 5

Medications, the Maze surgical procedure, and radiofrequency ablation are therapies that have been used to prevent or decrease episodes of AF and maintain sinus rhythm.6, 7, 8, 9 Patients with AF may experience distressing symptoms such as dyspnea, palpitations, dizziness, weakness, and anxiety, or the episodes may be asymptomatic.10, 11 One of the few studies that evaluated QOL in patients with AF found that AF patients had either similar or worse QOL across all subscales of a commonly used health status measure, Short Form 36 (SF-36), than 2 patient groups, even though the percutaneous transluminal coronary angioplasty patients were older and had worse left ventricular function.4 In addition, the AF patients had worse mental health scores and similar emotional and social role scores as patients with congestive heart failure, and either more or equivalent impairment on subscales as post-myocardial infarction patients.4 Thus AF, particularly if refractory to medication and other therapies, substantially impairs health status and QOL. To date, AF symptoms, frequency of paroxysmal events, and autonomic function have been associated with QOL in patients.12, 13 In addition to adversely affecting QOL, AF negatively affects patients' perceived illness intrusiveness, an important concept in acceptance of device technology. An AF patient cohort reported illness intrusiveness scores similar in magnitude to hemodialysis patients (35 vs 35), and significantly greater than an age-adjusted healthy cohort.5 This suggests that patients perceive AF as significantly debilitating both physically and psychologically.

A recent innovation in the treatment of patients with recurrent, symptomatic, and drug-refractory atrial fibrillation is the implantable atrial defibrillator.14 Early versions of the implantable atrial defibrillator had pacing and atrial defibrillation capabilities, and more recent models have added a ventricular defibrillation component. Implantable cardioverter defibrillator (ICD) with atrial therapies (ICD-AT) therapy is market approved for the AF Only indication (ie, no ventricular arrhythmias). The ICD-AT can be programmed to several operation modes including automatic, patient-activated, and pacing only. In the automatic mode, the device is programmed to monitor the cardiac rhythm for the presence of atrial fibrillation and to deliver therapy (1-27 joules) at a specific time. The patient-activated mode allows the patient to activate the device, once AF has been verified, at a particular time of their choosing with a pacemaker magnet. With either mode, patients experience the shock-like sensations of the therapy. As with any new device, patient acceptance of the technology is an important evaluation. Since AF is not life threatening, it is hypothesized that ICD-AT acceptance for an AF Only indication is related to the patient's perceived QOL improvement. This is in contrast to patients with ventricular arrhythmias who accept ICD therapy because it is life saving. Thus, the purpose of this qualitative study was to describe: 1) patients' experiences living with symptomatic drug-refractory atrial fibrillation and 2) patient acceptance of treatment and variables that associate with poor and good ICD-AT acceptance.

Section snippets

Methods

The study used a descriptive qualitative approach to examine the experiences and perceptions of subjects participating in a larger quantitative study involving assessment of patient acceptance and tolerance of the Medtronic Jewel AF7250 ICD-AT.15 This was a cross-sectional study design sampling patients that received the Jewel AF device for an AF Only indication (no documented ventricular arrhythmia indication) and were participating in the 7250 Jewel AF AF Only clinical study. Investigators

Context of the qualitative results

Eleven ICD-AT patients (8 men and 3 women, range 35-80 years of age) participated in the semi-structured interviews. All were married, and all had experienced AF that was unresponsive to treatment from 1 to 20 years (See Table 1). Participants had been living with the Jewel AF device from 6 months to 2 years. All participants had tried multiple medications in an effort to maintain sinus rhythm, and all had experienced repeated external cardioversions (once a month or more before the Jewel AF

Discussion

The ICD-AT is perceived as a useful therapy for patients with medication-refractory intermittent atrial fibrillation. In these stories, patient strength, endurance, willingness to try new therapies and incorporate them into their lifestyle routines, and ability to adapt to the technology are obvious. For some patients for whom therapy had been ineffective, associated with unpleasant or intolerable side effects, and sometimes painful and inconvenient, the ICD-AT seemed to be the only option for

Acknowledgements

The authors would like to acknowledge the contributions of Kathryn Wood, RN, PhD, for her ideas in the design of this study and Amy Valderama, RN, MSN, for her assistance in preparation of the manuscript.

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