INTRODUCTION
Atrial fibrillation (AF) management remains challenging and recurrence is common even after several treatment modalities (lifestyle changes, medications, and catheter ablation) have been implemented.1—3Patients may continue to report a variety of physical and mental symptoms, including dyspnea, chest pain, fatigue, anxiety, and palpitations, that limit daily functioning and health-related quality of life.2,3Treatment options for AF include medication management and catheter ablation, a minimally invasive, percutaneous procedure to restore and maintain normal sinus rhythm, primarily comprised of antral pulmonary venous isolation.4,5While clinical guidelines recommend ablations as a treatment strategy in certain clinical contexts, in practice these decisions must be made by assessing procedure risks and benefits.6Prior studies underscore the complexity of this decision choice; the recent Catheter Ablation vs Antiarrhythmic Drug Therapy for Atrial Fibrillation (CABANA) trial randomized controlled trial showed that AF recurred after ablation in 50% of cases, and almost 20% needed a repeat ablation.7Yet, at the same time, AF symptoms8,9and quality of life9,10may independently improve after ablation and other studies have reported that patients feel symptom reduction represents success for an ablation, regardless of the effect on rhythm control.11Thus, the definition of a successful ablation may vary between patients, and depend on their specific clinical characteristics as well as their values and goals of care.
Shared decision-making (SDM) is the ideal paradigm for exploring the complex risk and benefit choices surrounding ablation to arrive at a high-quality decision. SDM involves a discussion of risks and benefits of treatment options in the context of a patient’s values, expectations, and preferences with the goal of selecting a treatment that aligns with these priorities. Decision aids, structured instruments that explicitly describe the decision to be made and present unbiased information about options (including the option of taking no action), help patients become more involved in the SDM process and are demonstrated to improve patient knowledge, engagement, goals-values concordance of decisions, and satisfaction in SDM.12
SDM has been strongly encouraged for anticoagulation treatment decisions for AF patients with high stroke risk.13,14Accordingly, a number of decision aids have been developed to support patients deciding on an anticoagulant for stroke prevention.15–18However, SDM around rhythm and symptom control has yet to be explored. In fact, a recent study of nearly 1,000 patients with AF found that only 22% reported participating in SDM to select a rhythm control strategy, and 52% of patients who did not participate in SDM reported that they did not understand different rhythm control options.19Moreover, very few decision aids exist to support patients in selecting a rhythm and symptom control strategy.20,21
The objective of this study was to measure decision quality and describe decision-making processes among patients and clinicians involved in decision-making around catheter ablation for AF. The International Patient Decision Aids Standards (IPDAS) has determined that an important first step in developing a decision aid is to characterize patient involvement in the decision-making process and define decision quality.22Thus, in this paper we report on the initial needs assessment conducted as part of a larger body of work to develop a decision aid for AF rhythm and symptom control.