Patients' experiences across the trajectory of atrial fibrillation: A qualitative systematic review

Abstract Aim This study aimed to synthesize qualitative evidence on experiences of patients with atrial fibrillation (AF) during the course of diagnosis and treatment. We addressed three main questions: (a) What were the experiences of patients with AF during the course of diagnosis and treatment? (b) How did they respond to and cope with the disease? (c) What were the requirements during disease management? Design In this study, qualitative evidence synthesis was performed using the Thomas and Harden method. Data Sources Electronic databases, including PubMed, the Cochrane Library, Embase, Web of Science, Cumulative Index to Nursing and Allied Health Literature, the China Biomedical Database, the WanFang Database, Chinese National Knowledge Infrastructure and VIP, were searched. The databases were searched from inception to August 2021. Review Methods Two researchers independently selected studies using qualitative assessment and review instruments for quality evaluation and thematic synthesis for the data analysis. Results A total of 2627 studies were identified in the initial search and 15 studies were included. Five analytical themes were generated: ‘Diagnosing AF’; ‘The impact of AF on the patients’; ‘Self‐reorientation in the therapeutic process’; ‘Living with AF and QoL’; and ‘External support to facilitate coping strategies.’ Conclusions Our findings point out unique experiences of patients across the trajectory of AF related to delayed diagnosis, feelings of nonsupport, disappointment of repeated treatment failure and multiple distress associated with unpredictable symptoms. Future research and clinical practice are expected to improve the quality of medical diagnosis and treatment, optimize administrative strategy and provide diverse health support for patients with AF. Impact Understanding the experiences and needs of patients with AF in the entire disease process will inform future clinical practice in AF integrated management, which would be helpful in improving the professionalism and confidence of healthcare providers. In addition, our findings have implications for improving the effectiveness of AF diagnostic and treatment services. Patient or Public Contribution This paper presents a review of previous studies and did not involve patients or the public.


| INTRODUCTION
Atrial fibrillation (AF) is the most common persistent type of cardiac arrhythmia occurring clinically, and can lead to serious complications.
According to the European Society of Cardiology (2017), AF is defined as supraventricular tachyarrhythmia with uncoordinated atrial electrical activation and consequent ineffective atrial contraction. 1 Globally, the average AF prevalence ranges from 2% to 4%. In China, epidemiological data show that the prevalence of AF is approximately 0.7% in the overall population; this number increases with age, and a prevalence of 7.5% is observed among adults over 80 years of age. 2 AF-related complications include thromboembolism and heart failure in severe cases. 3,4 As the disease progresses, patients with AF experience various heart symptoms and physical discomfort. 5 Moreover, AF also affects psychological well-being, social connectedness and quality of life (QoL). 6 In recent years, numerous qualitative studies have explored the feelings and thoughts of AF patients at symptom onset, while seeking treatment and during recovery after the right treatment. However, each study has its own unique limitations, making it difficult to identify and summarize the general problems and challenges affecting the provision of high-quality care for AF patients. Qualitative studies addressing this topic have not yet been synthesized. The aggregation of findings from qualitative research is gaining importance for evidence-based healthcare. Therefore, the aim of this qualitative systematic review was to identify and analyse the perceptions and feelings of AF patients to provide a reference for developing family-and community-based nursing strategies for meeting the care needs of AF patients. To do so, we critically appraised and synthesized existing qualitative research exploring the experiences and needs of AF patients in the course of diagnosis and treatment.

| Aim
The aim of this review was to synthesize qualitative evidence on the experiences of patients with AF during the course of diagnosis and treatment. We addressed three main questions: (a) What were the experiences of patients with AF during the course of diagnosis and treatment? (b) How did they respond to and cope with the disease?
(c) What were the requirements during disease management?

| Design
A systematic review and thematic synthesis of qualitative studies were conducted. This review was undertaken according to the Enhanced Transparency of Reporting the Synthesis of Qualitative Research framework (ENTREQ). 7 This framework provides guidance on the synthesis of qualitative research and ensures the quality and rigour of the study.  (Table 1).

| Criteria for inclusion and exclusion
The following eligibility criteria were applied: 3. Articles focusing on contexts including symptom onset, seeking medical diagnosis and treatment and self-management after treatment (covering the entire process of diagnosing and treating disease).
Studies were excluded if they fulfilled the following criteria: Articles only explored the experiences related to anticoagulation therapy as it was considered that this exclusion did not detract from the study's efficacy; studies that were quantitative, mixed studies or reviews were excluded.

| Search outcomes
According to the search strategy, a total of 2627 studies were extracted from the databases. After the removal of duplicates, the researchers reviewed 2426 titles and abstracts and collected 50 full-paper studies for further review. In total, 15 qualitative studies fulfilled the inclusion criteria and were included, of which 13 were in English and two were in Chinese. The literature screening and selection process is shown in Figure 1.

| Quality appraisal
The quality of all the included studies was assessed using the Critical Appraisal Skills Programme (CASP) qualitative appraisal instrument; the rigour and credibility of the studies were assessed. Two authors independently rated the quality of the studies and discussed incongruity issues until a consensus was reached. Thirteen studies fulfilled nine or more of the 12 quality criteria, whereas the remaining two fulfilled 7 criteria (  (Table 3). Finally, we performed sensitivity analyses to assess the possible effect of study quality on the review's findings as well as the contributions of the study to the final synthesis.

| Data abstraction
The details of each study were extracted and complied in an Excel file (see Table 4). The main contexts of data extraction included author- ship, year of publication and country, methodological design and data collection, sample and sample size, research question and findings relevant to the review.

| Data synthesis
Data were analysed by two researchers (W. J. and L. S.) using a threestage thematic synthesis method. 8 Table 4. The data of interest were synthesized into five analytical themes with 13 descriptive subthemes ( Figure 2). As the sensitivity analyses show, the findings synthesized did not contradict each other, and no matter which article was removed, the results would be the same. A summary of each study's contribution to the synthesis is presented in Table 5. Both descriptive and analytical findings were reported as detailed below.  Meeting quality criteria  Quality grade  1  2  3  4  5  6  7  8  9 1 0 Two studies not suitable for the checklist were excluded. Consolidated criteria for reporting qualitative studies (COREQ): 32-item checklist: (1) Which author(s) conducted the interview or focus group? (2) What were the researcher's credentials? e.g., PhD, MD, and so forth.
(3) What was their occupation at the time of the study? (4) Was the researcher male or female? (5) What experience or training did the researcher have? (6) Was a relationship established before study commencement? (7) What did the participants know about the researcher? e.g., personal goals, reasons for doing the research, and so forth. (8) What characteristics were reported about the interviewer/facilitator? e.g., bias, assumptions, reasons and interests in the research topic. (9) What methodological orientation was stated to underpin the study? e.g., grounded theory, discourse analysis, ethnography, phenomenology, content analysis, and so forth.
(10) How were participants selected? e.g., purposive, convenience, consecutive, snowball. (11) How were participants approached? e.g., face-to-face, telephone, mail, email. (12) How many participants were in the study? (13) How many people refused to participate or dropped out? Reasons? (14) Where was the data collected? e.g., home, clinic, workplace, and so forth. (15) Was anyone else present besides the participants and researchers? (16) What are the important characteristics of the sample? e.g., demographic data, and so forth. (17) Were questions, prompts, guides provided by the authors? Was it pilot tested? (18) Were repeat interviews carried out? If yes, how many? (19) Did the research use audio or visual recording to collect the data? (20) Were field notes made during and/or after the interview or focus group? (21) What was the duration of the interviews or focus groups? (22) Was data saturation discussed? (23) Were transcripts returned to participants for comment and/or correction? (24) How many data coders coded the data? (25) Did authors provide a description of the coding tree? (26) Were themes identified in advance or derived from the data? (27) What software, if applicable, was used to manage data? (28)

| The impact of AF on the patients
The impact of AF on people was multifaceted. The study patients reported a wide range of physical symptoms and psychological, social and existential concerns.

| Biophysical life
A perception of decreased physical functioning was the most common problem reported by the patients. It is well known that physical fitness and level of daily activities are highly interrelated. With disease progression, patients' health states show degeneration, and they are no longer able to perform activities such as walking, cooking, shopping and housework. Some patients even lose their self-care abilities. 14,16-20 I love shopping, hanging around in shopping malls or markets, or spending money, but I cannot go to these places myself. 17

| Psycho-emotional life
The limitations of the illness also affected the patients' psychoemotional profile. Negative emotions were experienced by patients; this encouraged the patients to make effective use of internal and external resources to avoid symptoms and gain peace of mind.
Nevertheless, when unpredictable symptoms occurred, patients were observed to engage in ruminative thinking, to the detriment of their peace of mind. 11

| Self-reorientation in the therapeutic process
In the treatment phase, patients with AF still experienced confusion and were not fully adapted to their health condition. However, at the same time, they attended moment to moment to their treatment and Well, I felt incredibly comfortable all the way in, so you could say that when she asked if I was nervous or anxious, I almost think I continually said no because I felt really comfortable. 23

| Concerns and expectations regarding treatment
There can be a discrepancy between patients' expectations of treatment and the reality of treatment outcomes. Patients' expectations from early treatment were higher. They expected that the treatment would completely eliminate AF and that they would return to normal life posttreatment. However, only a minority of patients achieved longer-term control of symptoms after treatment; most patients experienced unsatisfactory outcomes and feelings of mental defeat. [14][15][16]18 Patients were willing to try new treatment options after a particular treatment failed. Catheter ablation was usually the backup option among patients with failed direct-current cardioversion. The properties of catheter ablation such as invasiveness and increased length of hospital stay increased the psychological burden on patients. It was worth noting that treatment efficacy was a key concern.
Patients could reduce their expectations of retreatment concurrently to avoid disappointment. Some of the patients who experienced multiple unsuccessful treatment procedures, their expectations disappeared. As no further treatment options could be available, they often expressed negative attitudes.
Patients with AF were at an increased risk of stroke and thus required anticoagulant prophylaxis. Some patients expressed that accepting anticoagulation would bring a large hassle. This is relevant not only to an increased risk of bleeding after taking anticoagulants but also to the rigid requirements of monitoring warfarin therapy via the international normalized ratio. In recent years, novel oral anticoagulants have been applied to AF patients, and patient preferences varied for this new drug therapy.
The formulation of anticoagulant therapy should be based on joint decisions made by the physicians and patients. [14][15][16][17][18][19][20][21] When you first go on warfarin you think flipping hell, I better not cut myself for brush my gums too hard. 16 I cannot come to the hospital regularly for the blood tests. You know waiting in the line in front of that door is just killing me. 17

| Living with AF and QoL
As AF can be a chronic condition, it is important for patients to be able to live with this condition for an extended period of time. The ability to cope with this condition directly determines the QoL of patients and influences the rate of improvement in health.

| Cognitive coping strategies
Cognitive restructuring was the most frequently used coping strategy. Patients felt shock and resistance when they were initially diagnosed with AF; this went against consistent bodily perception.
With disease progression and an increase in the severity of symp- We used the COREQ checklist combined with the CASP tool to thoroughly review the quality and transparency of reporting of the included studies. The COREQ checklist provides a descriptive supplement for the criteria in CASP and proves the reliability of the quality grade.
Using these two quality appraisal tools together could enhance the methodological rigour. More importantly, our findings were synthesized from different studies whose quality grades were strictly related to the credibility of the integrated results. Hence, we also performed a sensitivity analysis for the included studies and results. Interestingly, our findings are supported by studies with a quality grade of A or B; no conflicting viewpoints were presented in these studies. Therefore, we believe that our findings have high credibility.
Our results showed that patients experienced extended periods of uncertainty about the symptoms before AF was correctly WANG ET AL.
| 881 diagnosed. This finding is concerning because a delayed or missed diagnosis increases the risk for stroke and heart failure, and this may in turn make AF more difficult to treat. Therefore, it is crucial to detect AF as early as possible. International initiatives advocate the implementation of screening for AF in clinical practice. 24 Advances in wearable device technology will likely yield a variety of options for AF detection and AF burden assessment. 25 Additionally, while many patients did not recognize the symptoms, some healthcare providers (especially primary physicians) also misinterpreted the symptoms and dismissed them as insignificant. It is necessary to strengthen the training of medical personnel with reference to knowledge and skills to ensure rapid identification of AF and to improve the AF diagnosis rate. 26 The presence of multiple support systems can reduce the AFrelated pressure load of patients and help improve mental health states. 38 There was a significant need for medical, emotional and informational support among all participants in this study. At the hospital level, the construction of a telemedicine follow-up management system is encouraged to improve efficiency in delivering healthcare. With the help of the telemedicine platform, remote experts can successfully complete long-distance consultation, doctor-patient communication and impart information and knowledge. At the community level, various mutual-help activities should be promoted to provide multiple emotion regulation channels. It is noteworthy that education settings and modes of information delivery affect the knowledge and understanding of AF information. 39,40 In this regard, using visual materials such as booklets along with video-based animations as a substitute for oral advice and rebuilding a stronger social support system could increase the patients' level of knowledge about the disease and compliance with treatment; this is expected to enhance their positive coping levels.

| Limitations
Our review has some limitations. First, even though nine databases were queried, it is possible that some eligible studies were missed.
Second, we excluded studies only exploring the anticoagulation experience as it has been fully confirmed from the physicians' and patients' perspectives, respectively. Yet, it may have an influence on inferring reliable conclusions. Third, patients' experiences have been demonstrated to affect the spouses of the patients as well; however, this study did not include the family members of participants, and thus their preference was completely undetermined. In the future, it is vital to find effective ways to educate family members for improving the QoL in AF patients. Finally, two studies were not assessed using the COREQ checklist due to methodological limitations, which could weaken the overall assessment of confidence in the findings.

| CONCLUSION
Our findings highlight the unique experiences of patients with AF.
Delays in seeking medicine attention and delayed diagnosis make it difficult for patients to gain a deeper understanding of AF and its symptoms. Despite obtaining a definitive diagnosis of AF, patients were caught in a dilemma during the three-stage treatment period.
Specifically, they experienced confusion in decision-making, anxiety and pain during surgical treatment, and disappointment or despair during recurrent episodes of AF and when unpredictable symptoms occurred. AF also adversely affected the physical, mental, social life and self-worth aspects of patients. When faced with these challenges, patients were observed to aggressively attempt to establish a new life; they also expressed emotional needs and the need for further education. Future research and clinical practice are expected to improve the quality of medical diagnosis and treatment, optimize administrative strategies and provide diverse health support for patients with AF.