'It's like a frog leaping about in your chest': Illness and treatment perceptions in persistent atrial fibrillation.

OBJECTIVES: Persistent atrial fibrillation (AF) is an abnormal heart rhythm associated with low quality of life (QoL) and significant health-related costs. The purpose of the study was to examine patients' illness and treatment beliefs and ways of coping with AF symptoms, to provide insight into promoting better QoL and treatment-specific management.

DESIGN: Beliefs were explored across three procedural treatment groups using a qualitative cross-sectional design.

METHODS: Thirty semi-structured interviews were carried out with patients undertaking cardioversion (n = 10), catheter ablation (n = 11) and atrioventricular node ablation (n = 9). Interviews were transcribed and analysed using inductive thematic analysis with elements of grounded theory.

RESULTS: An overarching theme of a vicious cycle was evident, which related to perceived lack of knowledge and understanding of AF, attempts to control symptoms and negative emotional reactions to failed control attempts. This vicious cycle related to three subordinate themes: (1) unpredictability and uncertainty of AF and symptoms; (2) coping with symptoms through (a) avoidance (b) all-or-nothing- (c) slowing down behaviours; and (3) concerns and expectations about treatment.

CONCLUSIONS: Patients outlined a need to gain control of unpredictable symptoms by monitoring and varying activity levels. These behaviours were often appraised as ineffective at controlling symptoms, leading to heightened uncertainty and increased activity avoidance. Treatment concerns escalated with increasing number and invasiveness of procedures. Improving AF patients' perceived understanding of their illness and treatment and promoting more effective symptom-management strategies may alleviate psychological distress and improve QoL. Themes elaborated on the common-sense model whereby patients' beliefs about illness and treatment interact with coping behaviours. Statement of contribution What is already known about this subject? Quality of life (QoL) is disproportionately low in people with persistent atrial fibrillation (psAF). The common-sense model suggests illness perceptions and coping predict QoL in chronic illnesses. No previous studies have examined the idiosyncratic beliefs and coping behaviours of psAF patients. What does this study add? A vicious cycle of perceived lack of understanding of AF, attempts to control AF and distress at failed attempts at control, was a key theme. PsAF patients reported continued avoidance/all-or-nothing behaviours despite symptomatic relief post-procedure, and disengagement from enjoyable activities. PsAF patients reported procedure-specific concerns/expectations, which could be targeted in future interventions aimed at reducing distress.