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

Abstract

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.

Examining Adherence to Medication in Patients With Atrial Fibrillation

“…58 This is supported in AF patients by a qualitative study which reported AF patients' difficulty in identifying the benefits of individual treatments. 15 Poor knowledge of the necessity for warfarin is well documented; One study found that a majority of patients were unable to name one risk or benefit of warfarin or the reason for taking it. 59 A previous intervention in AF patients, which focused on improving understanding of warfarin and reducing perceptions of harm, significantly improved adherence and time spent in the therapeutic range.…”

“…A recent qualitative study suggested patients have negative perceptions about the potential harm of anticoagulants, but not antiarrhythmics. 15 Negative beliefs about anticoagulants may arise as vitamin-k antagonists, such as warfarin, require frequent INR monitoring to ensure patients are within therapeutic range (2.0-3.0), balancing bleeding complications with under-dosing and stroke-risk. 16 Dietary and drug interactions which affect INR, frequent INR-monitoring, and perceptions of warfarin as 'rat poison' add to greater perceived disease burden and may contribute to non-adherence.…”

“…16 Dietary and drug interactions which affect INR, frequent INR-monitoring, and perceptions of warfarin as 'rat poison' add to greater perceived disease burden and may contribute to non-adherence. 15,17 These negative beliefs may not apply to NOACS which do not have dietary interactions or require frequent monitoring. 11 To our knowledge, no previous research has been conducted into beliefs about NOACS and quantitative research is needed to confirm the relationship between negative beliefs about anticoagulants and adherence.…”

Atrial fibrillation, quality of life and distress: a cluster analysis of cognitive and behavioural responses

“…In the context of AF, higher personal control beliefs may be reflective of beliefs that AF is cyclic and that repeated behavioural and lifestyle modifications, reflected by high scores for this group on health-behaviour triggers, can prevent AF symptoms. This is supported by a recent qualitative study where patients who reported a perceived lack of understanding of AF, also tended to speak about increased monitoring of AF and control attempts, leading to increased emotional distress [37].…”

Dancing with atrial fibrillation – How arrhythmia affects everyday life of family members: A qualitative study

“…Several qualitative studies have focused on the patient with AF [12][13][14]. Quantitative studies have also shown how patients with AF struggle with impaired health-related quality of life, stress and anxiety due to AF symptoms [15].…”