Should we be screening people with diabetes for atrial fibrillation? Exploring patients’ views

Atrial fibrillation (AF) and diabetes are increasingly prevalent worldwide, both increasing stroke risk. AF can be detected by patient-led electrocardiogram (ECG) screening applications. Understanding patients’ views around AF screening is important when considering recommendations, and this study explores these views where there is an existing diagnosis of diabetes.

Nine semi-structured qualitative interviews were conducted with participants from a previous screening study (using a mobile ECG device), who were identified with AF. Thematic analysis was completed using NVivo 12 Plus software and themes were identified within each research question for clarity.

Themes were identified in four groups:

1. patients’ understanding of AF – the ‘concept of irregularity’ and ‘consideration of consequence’;
2. views on screening – ‘screening as a resource-intensive initiative’, ‘fear of outcomes from screening’ and ‘expectations of screening reliability’;
3. views on incorporating screening into routine care – ‘importance of screening convenience’; and
4. views on the screening tool – ‘technology as a barrier’ and ‘feasibility of the mobile ECG recording device for screening’.

In conclusion, eliciting patients’ views has demonstrated the need for clear and concise information around the delivery of an AF diagnosis. Screening initiatives should factor in location, convenience, personnel, and cost, all of which were important for promoting screening inclusion.

Introduction

There is an increasing prevalence of atrial fibrillation (AF) worldwide, with a one-in-three lifetime risk of developing AF over the age of 40 years.¹ AF is a leading cause of stroke, and stroke risk is increased further in the presence of diabetes.² Diabetes has been recognised as a risk factor for AF and, therefore, targeted screening for AF in such groups has been explored in combination with comorbid risk factors.²

There are yet to be universally accepted recommendations for AF screening. The European Society of Cardiology (ESC) recommend opportunistic screening in people >65 years and consideration of systematic screening when >75 years, or in those at higher risk of stroke.³ The AF-SCREEN collaboration promotes worldwide implementation of AF screening in people >65 years.⁴ Furthermore, Public Health England incorporate AF within their ‘ABC’ (Atrial fibrillation, Blood pressure, Cholesterol) campaign for cardiovascular disease prevention, with emphasis on nationwide screening.⁵

Opportunities for AF screening are enhanced through commercialisation of digital monitoring applications.⁶ Many of these can be patient-initiated, and it is, therefore, important to understand patients’ views of AF screening. The views of population groups likely to undergo AF screening is needed to inform screening recommendations relating to acceptability and engagement with implementation programmes.

This qualitative study explores patients’ views and experiences of AF screening and understanding of AF (from screened patients in the previous study).⁷ Patients’ views on how we can incorporate screening into routine care and the screening tool used to detect AF in the aforementioned research are also sought in this study.

Research questions

The research questions for this study are:

• What do patients understand of AF?
• What are patients’ views on screening for AF, particularly when diabetes is an existing condition?
• How do patients view screening tools for AF? Is this seen as a beneficial and tolerable approach?

Method

Study design and study materials

This study adopted a qualitative design, with one-to-one in-depth semi-structured interviews with patients who had diabetes, and then a diagnosis of AF from the screening study. The interview schedule is set out in table 1.

Recruitment and sample

Patients were recruited from a previous screening study, all of whom were eligible for inclusion in this current study and who had been identified as having AF.

Eligible participants were invited by telephone then sent an information letter and consent form. After a two-week reflection period, invitees were telephoned again to confirm consent. Consenting participants returned a signed consent form in a stamped-addressed envelope and a time convenient to the participant scheduled for interview. Of the 16 eligible participants, nine were interviewed (two had died, four were uncontactable and one declined).

Procedure

Interviews were conducted over the telephone and audio recorded. Recordings were transcribed verbatim and anonymised (by assigning identification numbers). Interview duration ranged from 30 to 60 minutes. Interviews were conducted by the first author (AH), using the semi-structured interview guide (table 1). Open-ended questions allowed for new areas of conversation to emerge and then explore.

Data analysis

NVivo 12 Plus qualitative data analysis software (QSR International) was used to support inductive and deductive thematic analysis of the transcripts. Thematic analysis involved reading each transcript carefully and repeatedly, identifying patterns and assigning codes.⁸ Initially, this was through reading line-by-line, using descriptive labels and coding schema, then iteratively refined. Themes and sub-themes were then developed inductively from the data, focusing on factors participants’ spoke about in greater depth, rather than their prevalence (although there was some correlation). When no new data, themes or relationships could be identified, no further data analysis was undertaken. As a specialist in the management of AF, the lead researcher (AH) had an in-depth understanding of AF and tried to impose no influence during interviews, but there may have been inference through phrasing, due to predetermined expectations.

Results

Of the nine participants, eight were male and the mean age was 69 years (range 53–86). Developed themes were assigned within each of the research questions with sub-themes where appropriate. (Numbers in brackets identify the participant.)

Patients’ views on AF

Theme: the concept of irregularity

Patients were asked about their understanding of AF. All participants knew this related to their heart and some mentioned an irregularity.

• “Well it’s an electrical irregularity and I’m taking blood thinners for it.” (2)
• “It’s something to do with an irregular movement [of the heart valve].” (7)

Varying descriptions demonstrated different levels of understanding including mention of double heartbeats, too much blood flowing through the heart, one side of the heart not running properly or at the right beat, and the heart pumping too fast.

Theme: consideration of consequence

Infrequently, blood-thinning medications were identified as relatable to AF, with one participant mentioning this among their treatments and another naming their anticoagulant, but nobody directly referred to stroke. AF was considered a consequence of stress or high blood pressure by two participants. A ‘leakage of water’ in the legs was also considered to relate to AF by either the arrhythmia causing the water leakage or vice versa.

• “…I mean apparently I’ve had this problem for quite a long time and it was caused through stress and anxiety.” (4)
• “…I’m taking blood thinners for it which makes it easier to be pumped round…” (2)

This varying recall of information was apparent, despite all participants being informed by the lead researcher (AH) at the time of screening and diagnosis, having an AF information sheet and visiting their GP for follow-up consultation. Some also had subsequent visits to the hospital for cardiac investigations.

Patients’ views on health screening and screening for AF

When asked about health screening in general, patients were able to draw on experiences of screening for their heart and diabetes and their insights may, therefore, represent the demographics of this population. For example, participants talked of their comorbid conditions, making reference to blood glucose monitoring or retinal eye screening.

Theme: screening as a resource-intensive initiative

Factors relating to resource included cost of screening for the test, the appointment, the location and getting to the location. Cost saving was talked of for longer-term benefits.

• “You gotta think of the cost… the amount of people, the number of appointments mucks the hospital up. I don’t know what it costs for every appointment at the hospital. Must be a hundred quid.” (6)
• “Doesn’t take any time and you’d err you’d soon see trends building up. It could save a fortune.” (2)

Without prompting, reference was made to the appropriate age of people to undergo screening, in general, and in relation to AF.

• “Well maybe some of it could be when you get to a certain age maybe the doctors could do a bit of a screening could they? [The interviewer asked what age they thought would be appropriate]. Umm, say 50, 55 I suppose.” (6)
• “…certainly if you’re over 50 or whatever, you can do a lot of simple screening on your phone.” (2)

Theme: fear of outcomes from screening

Patients reported disparate expectations ranging from fear around screening engagement, to wider benefits in relation to their own health. The ‘necessity’ of knowing about health conditions was reported. None of the participants regretted taking part and all preferred to know about their diagnoses.

• “It if helps people find out about stuff, if you’re not a guinea pig you might not find about cancer or things… That thing you did with me [referring to the Kardia® heart rhythm recording], I wasn’t worried about it. If you don’t do it, you don’t know.” (6)
• “…the benefits of that are you know your heart’s not running properly so it could be put back into the right way, so it’s running right again.” (6)

When asked about reservations of taking part, one participant explained they were wary of the screening invite and wondered if it was a ‘scam’.  This was not, however, related to previous screening invites, but was compared to promotional offers of help.

Screening follow-up including appointments, time off work and consequence, was included in responses, although these were from hypothetical scenarios, rather than personal experiences.

• “…still too many people in the United Kingdom are afraid of discovering something is wrong… they’re worried about taking time off work and the whole thing, they’re worried about taking up the doctor’s time…worried they won’t get an appointment and waiting lists… sort of universe of distracting concerns…” (9)

Theme: expectations of screening reliability

Lack of education around the benefits of health screening was shared by one participant, who felt that their scientific and medical model beliefs, lead to their desire for knowledge [of the presence or absence of disease]. The accuracy of ECG screening and monitoring was considered reliable by the same participant, but less so by another. Another patient recognised that things could change over time, with one screening episode not being sufficient or accurate.

• “Any form of screening is a good thing and because 99 err 90 per cent of the time umm nothing was detected then all of a sudden there’s a change in the readings…” (2)

Patients’ views on how we can incorporate screening into routine care

Theme: the importance of screening convenience

Views on screening location revealed that visiting the GP for this purpose was more favourable than the hospital, which was seen as a deterrent to screening opportunities due to logistical difficulties, access, transport, and parking. One patient commented that they would not attend if invited to hospital-based screening. GP screening was mentioned most frequently with other clinically relevant departments also suggested, e.g. ophthalmology and the diabetes centre. The viewpoint that healthcare is too centralised to hospitals was voiced, and the need to decentralise by incorporating community GP-based screening was emphasised.

• “…if I get a letter from the hospital saying we are doing XY and Z screening please make an appointment for screening, I throw it in the bin.” (9)

Convenience seemed to directly relate to patient motivation with attitudes towards health beliefs contributing to involvement. A dedicated screening centre was suggested, as was a mobile screening unit. Incorporating screening into existing appointments was suggested as an effective approach for encouraging participation.

• “It’s a good thing because as I say, I go for my three-month to see my GP and he checks me out and … they put all the machines on you.” (7)

The patient–professional relationship was felt relevant to the success of screening opportunities, and if offered by a healthcare provider they trust, might entice involvement.

Patients’ views on the screening tool (a single-lead mobile ECG recording device)

Theme: technology as a barrier

Familiarity with screening devices varied, with some participants relaying benefits to health screening and self-monitoring, particularly in the presence of multi-morbidity. One patient explained the presence of diabetes and AF alongside respiratory disease, and that this encouraged their use of home monitoring devices and associated technology.

• “Well I have a blood pressure monitor and a blood oxygen monitor and I have my blood sugar monitor and I use them.” (9)

Technology know-how was reported as a potential barrier to screening tools, as was older age. Younger people with familiarity around apps and mobile health was emphasised. This was considered important to encourage health monitoring, lifestyle, and behaviour modification, with an overall proactive approach to modern healthcare. The focus on age was not, however, echoed across the group with participants stating their confidence with mobile phones and health-related applications, despite being of older age.

There was existing familiarity with the Kardia^® device specifically, with some reporting previous use or, at least, visualisation of the device in the public domain.

Theme: feasibility of the mobile ECG recording device for screening

The ability to use the device at home for repeated recordings was suggested, with recordings then shown to the GP for surveillance along with, for example, blood pressure monitoring. The portability of the device was attractive, along with ease of use, convenience and comfort.

This ease and convenience were encouraging when frequency of screening was contemplated. Using the device once a week was suggested, but nobody commented on using it during symptoms, such as palpitations.

• “…you can keep it handy, put it in a drawer and do it once a week… Yeah, I suppose about once a week would be about right.” (6)

One participant felt the device was good, if it was accurate. Another felt the accuracy was probably not entirely reliable, but was good enough to detect a problem, which could lead to further investigations.

Discussion

Previous research has shown that patients who have a good understanding of AF, report greater acceptance, fewer symptoms, enhanced coping mechanisms and less negative emotions related to the arrhythmia.⁹ Patients’ understanding and interpretation of AF in this study, which was limited in content and knowledge, is therefore relevant. All patients were provided with the same information and asked to see their GP. The researcher (AH) explained the diagnosis of AF verbally to support the information provided, which appeared to be understood at the time, but not retained.

Stroke was not mentioned, although two participants mentioned taking blood-thinning medicines. This limited understanding of stroke risk is concerning, and may be a factor in treatment adherence. Previous research regarding patients’ understanding of AF showed that many were unaware of the name of the condition.¹⁰ Another study showed that patients had difficulty understanding the need for anticoagulation, particularly when advised as a life-long treatment.¹¹ It may, however, be that this was inadequately explained rather than related to patient comprehension. A study whereby patients were interviewed following a recent diagnosis of AF, described ‘knowledge deficit’ two weeks after the AF diagnosis, relating to AF symptoms, medications and stroke risk.¹² Another study considered patients’ understanding at the time of the emergency department visit, then three months later and concluded similar findings.¹³ This link with health knowledge and health status has been well documented and can result in under-utilisation of preventative resources including screening.¹⁴

Further considerations around this lack of perceived awareness of AF and stroke risk, could be, in part, due to the asymptomatic nature of their arrhythmia. None of the interviewed patients commented on problems relatable to AF. None had needed specialist input and, when screened in the original AF study, were haemodynamically stable with normal physiological measurements (besides the AF heart rhythm tracing), exhibiting and reporting no symptoms. It is possible that patients with symptoms of AF, requiring specialist intervention, complex medication management or sequelae of their arrhythmia would be more familiar with the condition and treatments, as opposed to those in this cohort. While there is little evidence to support this in existence, experience of symptoms could improve understanding, and so, health literacy.

Recommendations regarding appropriate patient information for AF have been published elsewhere, and include keeping pathophysiological information basic.¹⁵ Learning how much the patient wishes to know is important, along with situating information within the contextual factors (social and psychological) that effect experience and understanding of symptoms, physiological mechanisms, and psychosocial factors. Using a variety of media platforms can be beneficial according to patients’ preferences.

Screening for AF was generally regarded positively in this research, and all participants were pleased to have knowledge of the arrhythmia. There was, however, acknowledgement that not everyone may be open to accepting a new diagnosis or entering screening programmes. Cost featured heavily in terms of resource and screening approach, but cost savings were also noted. Screening location was preferred at a GP practice or similar outpatient-based environment, and hospitals regarded as a deterrent to screening opportunities. As screening approaches evolve, an expanded role within primary care can be anticipated, but this incorporation may place additional strain on already stretched systems.¹⁶ Evidence on the effective implementation of screening in primary care is required to ensure efficient use of resources, beyond consideration of the screening tool that has been a focus in heart rhythm screening research.

The ECG recording device was viewed positively by all participants, with comments relating to ease of use, portability, comfort, perceived accuracy, convenience and being patient-led. Technology know-how was considered essential when patient-led, but not a barrier, with many reporting mobile phone and digital technology familiarity. This concurs with acceptance of screening devices by participants in large-scale trials.^17,18

Limitations

Further research exploring patient views, particularly in relation to risk-factor modification, would be beneficial. This research did not include questions around causes or symptoms. The sample included people who had agreed to participate in a screening programme who had diabetes and, therefore, may not be transferable to other patient groups. All but one participant was male and, therefore, female views were less represented. Female participants may have had different interpretations of screening due to female-orientated screening programmes. All interviewed participants had AF, but widening this to screened groups who did not have AF, or who had not undergone specific screening, might offer valuable data in terms of AF screening considerations.

Conclusion

This study highlights that patients’ understanding of AF varies, and AF consequences, such as stroke, did not feature when exploring their views. Supporting patients to comprehend possible causes of AF, modifiable risks and treatment options is imperative for adherence and working in partnership, to reduce sequelae and improve quality of life.

Understanding patients’ views of AF screening, including barriers, is important when planning screening programmes. Employing tools that are valid, while easy to use, offers further opportunity for AF screening.

Key messages

• Atrial fibrillation (AF) and diabetes are increasing in prevalence and are risk factors for stroke. Patients’ understanding of their AF is important for treatment concordance
• Patients’ views on screening for AF demonstrate this as an accepted and beneficial undertaking, with screening tools and location important for screening attendance
• Incorporating patients’ views and experiences is essential within patient-orientated practice and research, and outcomes should be applied to the design of screening programmes

Conflicts of interest

None declared.

Funding

None.

Study approval

Ethical approval was granted by the Faculty of Health and Medicine Research Ethics Committee at the University of Lancaster (Ref: FHMREC20156) and the Health and Community Service Research Ethics Committee in Jersey (Ref: 2021/HCSREC/02).

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