1. ⁶Liverpool Centre for Cardiovascular Science, University of Liverpool, Liverpool, Merseyside, UK
2. ⁷Department of Epidemiology, School of Public Health, Universidade de Sao Paulo, Sao Paulo, Brazil

1. Correspondence to Dr Alessandra C Goulart; agoulart{at}hu.usp.br

To provide insight into how people cope with living with atrial fibrillation (AF) and taking oral anticoagulants (OACs), informing how services and healthcare delivery could be improved to offer the appropriate support patients require, thereby optimising their quality of life and well-being.

A qualitative study employing focus group discussions (FGDs).

11 primary care units in a socioeconomically deprived area of the Butantan district in São Paulo, Brazil.

Adults (≥18 years) with AF purposively recruited based on sex, age and socioeconomic status.

Saturation was met with three FGDs comprising seven, five and five participants, respectively. Theme one focused on self-management, where many participants discussed their methods for adhering to dietary restrictions and alternative medications, including plant-based options and specific foods, and how they modified their daily activities to reduce AF complications and symptoms. Theme two was rationality, where participants described three main ways that they cope with taking long-term medication (often warfarin): thinking that it controls their AF symptoms; it is an obligation; it prevents morbidity and premature death. Theme three was attitude and emotions, where participants described their initial reactions of shock and fear after diagnosis and ongoing emotions of sadness and frustration due to required self-management activities and regular blood tests. Theme four was medication regimen, where participants discussed difficulties with polypharmacy, changes to AF medication (particularly from non-vitamin K antagonist OACs (NOACs) to warfarin), side effects from taking warfarin and various methods of medication management.

This study presents three key findings with implications for patient care and support. First, the shock and fear experienced during diagnosis due to a lack of knowledge about AF suggests that improvements in public knowledge about AF are needed. Second, people with additional chronic conditions may need improved care and support, given the concern participants had regarding when and how to take their medications safely. Third, improved access to NOACs may reduce the difficulties, frustrations and concerns participants had regarding warfarin use (eg, diet, dose adjustments, self-management and monthly international normalised ratio tests).

Data are available in a public, open access repository. All data relevant to the study are included in the article or uploaded as supplementary information. Not applicable.

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People living with a chronic condition often experience a cycle of hope and frustration regarding treatment, with expectations about treatment effectiveness and medical advice fluctuating throughout the course of their illness.1–3 For some conditions, people may experience what some sociologists term ‘the Sisyphus syndrome’ where patients try a treatment only to find minimal improvement in the condition or symptoms, resulting in the need to start over again with a new kind of treatment or dose of medication1; the impact of this can be physically and emotionally exhausting. Therefore, patients must adapt to, or cope with, their chronic condition and the potential changes in symptoms and medication over time. Coping with chronic long-term conditions, such as atrial fibrillation (AF), can be defined as processes an individual learns and does regarding how to tolerate the effects of illness.1 Qualitative evidence on how patients cope with AF, a chronic condition that requires daily medication, lifestyle modifications and often monthly blood tests, is lacking, particularly in low- and middle-income countries (LMICs).

AF is the most common arrhythmia globally and increases the risk of stroke 5-fold,4 although oral anticoagulants (OACs) can significantly reduce the risk of stroke.5 6 Vitamin K antagonists such as warfarin are commonly prescribed in LMICs, but these require periodic testing to measure the international normalised ratio (INR).5 7–9 Additionally, the warfarin dose requires adjustments, and the patient may also need to make changes to diet and lifestyle behaviours (eg, reducing alcohol intake, avoiding contact sports, etc).10 While non-VKA OACs (NOACs) have similar efficacy compared with warfarin11–13 and do not require INR testing, they are less readily available in LMICs.14 15 Thus, people with AF in LMICs have little option but to manage their condition with warfarin and monthly blood tests with regular dose adjustments.

Evidence suggests that living with AF and experiences with poor INR control adversely affect quality-adjusted life years.16 A 2017 systematic review found six qualitative studies that reported on patients’ attitudes towards and perceptions of OACs; although all were conducted in high-income countries (HICs).17 From the six themes identified,17 the data suggested that AF patients felt they were often misinformed about the effects of OACs from other patients, caregivers and physicians, had diverse views on the benefits and risks of OACs and experienced difficulties in implementing the doctors’ instructions in the daily management of medication. Patients also emphasised their dissatisfaction with the difficulties and costs related to INR monitoring, their desire for more shared decision-making between them and their doctors, and the impact that AF had on their daily living, including limitations and restrictions to diet and exercise.17 Since this review, another qualitative study was conducted, which investigated patient perspectives on OAC treatment among 10 patients with AF from Australian general practices. Authors reported the following key facilitators: patient passive attitudes regarding decision-making, adequate explanation on health advice from doctors for better prognosis and patients having a clear understanding of OACs. Two key barriers were sometimes the lack of explanation from doctors and the inconvenience of taking warfarin.18

These findings contribute to our knowledge of patients’ views on OACs; however, it must also be understood how patients cope with the diagnosis, responsibilities and self-care required to effectively manage AF, particularly in LMICs where barriers to adequate healthcare and the ability for self-care often differ to those reported in HICs.17 Through focus group discussions (FGDs) strategy, we aimed to provide insight into how AF patients cope living with this condition in Brazil, to inform services and healthcare delivery from an LMIC setting about the appropriate support patients require to optimise their quality of life and well-being.

20 patients were invited to take part; however, three declined. The remaining 17 patients provided written consent to participate in one of three FGDs (seven, five and five participants, respectively).30 The median age of participants was 58 years (IQR: 53.5–66.5 years), nine were men, most had completed secondary education (n=11), were married (n=13) and were either retired (n=6) or unable to work (n=5) (table 1). Our data met saturation, with no new themes arising from the third and final FGD.

The coding tree (figure 1) depicts four main themes that were captured from the FGDs: self-management, rationality, attitude and emotions and medication regimens. Each theme and its corresponding subthemes are described below in more detail with supported quotes; additional quotes from the FGDs can be found in the supplementary material (online supplemental table S1). Most subthemes were mentioned in all FGDs; however, where this was not the case, the FGDs in which the theme arose are noted.

Our findings from three FGDs indicate that people with AF, as with other chronic long-term conditions, often go through a series of emotions and reactions following diagnosis in an attempt to cope with living with the long-term condition. Three key findings have implications for patient care and support. First, participants expressed feelings of shock and fear at the time of diagnosis due to a lack of knowledge about AF. Second, people with AF often have one or more comorbidities,31 and taking OACs alongside other medications was often raised as a concern for participants due to uncertainties about when and how to take their medications safely. Third, participants receiving warfarin expressed difficulties, frustrations, concerns, sadness and uncertainty regarding warfarin use, particularly relating to restrictions on diet, dose adjustments, self-management and monthly INR tests.

Previous qualitative studies have reported patients’ perceptions regarding the use of VKAs; however, most data are from HICs and do not capture indepth information about other aspects of coping with living with the chronic condition.32–37 Our findings that people lack information on AF before and after diagnosis are consistent with existing evidence,34–37 causing patients to feel fearful and distressed. Many of our participants were unaware of the causes, risks and management of AF; many did not understand why it was necessary to continue on warfarin if their INR was within the therapeutic range. The lack of knowledge contributed to the difficulties that some participants faced in finding a way to cope with the condition.

Better public awareness that AF is common and easily diagnosed and managed could aid in reducing fear or psychological distress following AF symptoms and diagnosis. Following diagnosis, it is crucial for patients to have access to the information they need to help them understand the aetiology of the condition, medication options and their associated risks and benefits, the management process and what they should or should not do to maintain good health and prognosis. Such information can reduce fear and psychological distress, encourage self-care and empower them to take part in the decision-making process for their treatment plan. Evidence-based information may reduce misunderstandings related to diet and other lifestyle behaviours mentioned within the FGDs, which have been said to originate from advice given by ill-informed community members in other settings.34–36 The effectiveness of standardised evidence-based information along with other opportunities to help patients with AF cope (eg, peer support) should be explored.33

Most participants in the present study had multiple comorbidities, which is common among people with AF.31 Living with multiple long-term conditions often has a negative impact on quality of life, clinical outcomes and, due to polypharmacy, the risk of drug-drug interactions is heightened.38 Managing multiple prescriptions can be complicated (eg, some medications must be taken with food, others at certain times of the day and others should be avoided with certain prescription or over-the-counter drugs), which can cause significant stress. Indeed, our findings revealed that people with AF have concerns regarding the uncertainties about when and how to take the many medications they have alongside warfarin. AF is managed in secondary care within specialised anticoagulation clinics in Brazil and many other LMICs14 39; this care is often fragmented and separate from clinics providing care for other long-term conditions, creating challenges for people with multiple long-term conditions and healthcare professionals that manage these patients. To ensure patient safety, improve clinical outcomes and reduce polypharmacy, information continuity between and within healthcare facilities is critical.40 This can be done through integrating services (electronically and/or physically) and/or patient-held documents. However, our previous research indicated that patient-held documents are not well used in Brazil for AF (manuscript in preparation), and most facilities are often not electronically mature enough for integration,39 indicating the need for strengthening healthcare infrastructure and systems to ensure people with AF have the information and advice they need for managing multiple long-term conditions simultaneously.

Warfarin is free of charge in the Brazilian public healthcare system, but patients must pay out of pocket for NOACs. Some participants mentioned how they preferred taking NOACs but were forced to take warfarin due to the costs of NOACs; a finding consistent with other qualitative studies.34–36 This indirectly created challenges for many people with AF in our study. Regular INR tests, as required when on warfarin,41 were difficult to maintain for people with AF due to the lack of local infrastructure to perform these tests, the costs and time involved with travelling to clinics or hospitals and the overall burden of attending the healthcare facility monthly. Similar findings have been reported from other qualitative studies conducted in HICs with people with AF and their caregivers.34–37 From previous pathway mapping of AF care in Brazil,39 Sri Lanka42 and China (under review), access to and regular need for INR tests were reported as barriers to optimal AF care. Furthermore, a previous study reported that primary care clinicians often feel less confident about prescribing and monitoring warfarin due to uncertainties about bleeding risk.43 Healthcare professionals in Brazil have indicated their preference for prescribing NOACs over warfarin for the majority of people with AF,44 and NOACs could reduce the need for INR tests and therefore reduce visits to healthcare facilities, which for many people in LMICs require a long distance to travel. NOACs could, in turn, improve clinical care for people with AF and their ability to cope with living with AF, as well as reduce costs to patients and healthcare systems. However, NOACs are not suitable for all patients with AF (those with mechanical heart valves or moderate-to-severe mitral stenosis), and OAC choice should be made on a case-by-case basis, considering risk factors, patient preferences and drug availability.10

Using NOACs could also reduce the frustrations caused by diet restrictions on warfarin, a finding highlighted from nearly all qualitative studies on AF,33–36 including the present study. There is no evidence that one should refrain from eating foods rich in vitamin K when taking VKA such as warfarin.45 Anecdotally, however, physicians often recommend that people with AF reduce their intake of foods high in vitamin K, which includes green vegetables such as spinach, cabbage and broccoli. The underlying rationale for this lies in the action mechanism of warfarin that interferes with the action of vitamin K and therefore prolongs the time it takes to form a clot, the intended effect of anticoagulant therapy.44 Increasing vitamin K intake while you are on warfarin may therefore work against the action of this medication.44 Although this is not a strict recommendation, a systematic review by Violi et al45 found that people with AF believe that avoidance of vitamin K-rich foods is a requirement when on warfarin and their knowledge about diet is incorrect. Particularly in Brazil, we have reported previously that patients’ beliefs regarding the interference of a vitamin K-rich diet on coagulation are a key concern.46 Efforts should be made to change how this recommendation is communicated in practice, particularly in LMICs where warfarin is used more frequently and plant-based diets are more prevalent.14

This qualitative study aimed to provide insight on how patients with AF cope with living with the condition in Brazil to inform services and healthcare delivery from an LMIC setting about the appropriate support patients require to optimise patients’ quality of life and well-being. Our findings highlight that people with AF often feel shocked and worried about their initial diagnosis due to lack of knowledge about AF, feel burdened with the inconvenience of monthly INR tests when on warfarin, feel worried about how to take warfarin in conjunction with other medications and feel forced to take warfarin due to the inaccessibility of NOACs and uncertainty regarding daily lifestyle behaviours, such as diet. Improvements in public knowledge about AF, accessibility of NOACs and improved care and support for people with multiple chronic conditions may be warranted to aid people with AF cope better with living with this chronic condition in a way that reduces stress and optimises well-being and quality of life.

Data are available in a public, open access repository. All data relevant to the study are included in the article or uploaded as supplementary information. Not applicable.