The identifiers given alongside quotes in this section are P (patients), GP (GPs), PN (practice nurses), HFSN (HF specialist nurses), C (cardiologists), and other HP (other health professionals).
Diagnostic difficulty
For any practice to be ‘normalised’ into routine practice, there needs to be a clear understanding and differentiation between aspects of the illness, tests, and treatments that are integral to ‘sense-making work’ — a key mechanism of NPT (see Supplementary Table S2 for details). Three main factors were influential in preventing timely differentiation of HFpEF that had the potential to delay appropriate care: the challenge of the normal echocardiogram (echo), variability in referral pathways and specialist input, and a convoluted pathway to diagnosis (the HFpEF maze).
The challenge of the ‘normal echo’
Some clinicians expressed concern that HFpEF may be overlooked in a system attuned to identifying patients with the more easily recognisable and understood HFrEF:
‘We seem to have a fixation on ejection fraction in this country, and if it’s not abnormal then everything is happy doolally.’
(C1)
GPs conveyed uncertainty about making sense of results, reporting a ‘normal echo’ (that is, an echocardiogram showing a normal or near-normal ejection fraction), which could hinder a timely diagnosis:
‘I feel like the diagnosis probably comes later down the line because patients or clinicians are a bit thrown by “oh, they have a normal echo”, or “this doesn’t quite fit”.’
(GP1)
Many GPs emphasised that they were not trained to evaluate echo reports; they often relied on summaries or conclusions provided within them, which were viewed as variable in quality.
Variability in referral pathways and specialist input
A key challenge was getting the diagnosis correct; many clinicians indicated a need for specialist opinion:
‘Diagnosing reduced ejection fraction is hard; so then, diagnosing preserved ejection fraction is even harder, and I think that should be done by a specialist.’
(HFSN1)
Referral practices varied; some involved routine specialist review, while others included triaging within a tier 2 community cardiology service (an intermediate service led by a GP with a special interest in cardiology) or a community direct access echo. Findings showed the expedience of the direct access echo might be countered by delays caused by duplication in secondary care as a result of access and quality issues with community echos. Some specialists expressed concern over potential missed or inaccurate diagnoses with direct access echos without specialist review. GPs, in this situation, wanted more guidance about referral practices:
‘I think the HFpEF is hard because there just seems to be a lack of guidance about, I think particularly about who to refer.’
(GP7)
A convoluted pathway to diagnosis: the HFpEF maze
Patients’ descriptions of their diagnoses frequently contrasted with the linear referral pathway of protocols and guidelines, instead conveying a convoluted, protracted series of hospital admissions or specialist visits. Patients reported feeling frustrated or concerned during delays, in which their health typically deteriorated and required hospital admission:
‘Well, I kept going back to the doctor’s and he kept sending me back to the clinics, and they all kept saying, “no it’s not me”, and “no it’s not me” … I was going from one to the other, and one was saying it was the lungs, and the other one was saying, “no, it’s definitely the heart”.’
(P13)
Clinicians also acknowledged that a patient’s quest to reach a correct diagnosis could be lengthy, involving the navigation of a complex system with numerous visits to multiple clinics:
‘Often people have been batted from, they’ve gone through a lot of different clinics, and no-one’s really given them a diagnosis.’
(C1)
Patient and clinician accounts illustrated the incidental nature wherein heart problems became visible when individuals underwent interventions for other health complaints, such as elective surgery or hospital admission with pneumonia. Analysis suggested that comorbidities, non-specific symptoms (including no pain), and multifactorial breathlessness often resulted in a prolonged diagnostic process.
Unclear illness perceptions
NPT suggests that communal and individual understanding about an illness is necessary to facilitate optimal management. In this context, a lack of application or shared understanding of the label of HFpEF across patient and clinician accounts was viewed as a potential barrier and one closely interrelated with differentiation of this condition. Furthermore, the seeming complexity and lack of clarity surrounding the condition appeared to hinder clinicians and patients acquiring an in-depth or shared understanding of the condition.
What’s in a name?
Few patients were aware of the label of HFpEF before participating in the study. Those that were aware had been introduced to the term in secondary care or by HF specialists; these individuals were often proactive in the process:
‘Well, I mostly did stuff myself and then asked some questions after my pacemaker … it’s only recent that I’ve understood it properly and it’s something which is called, well you know this, it’s preserved ejection fraction isn’t it?’
(P14)
Many primary care clinicians were unfamiliar with the term HFpEF; it was not readily visible in correspondence or patient records, and was not viewed as being applied consistently. Some expressed uncertainty about whether this label represented a new classification:
‘I understand it’s slightly synonymous with diastolic dysfunction, isn’t it? ... I think it’s an up and coming term but I don’t think we really know very much about it at the moment.’
(GP18)
Several clinicians indicated an awareness of professional scepticism with the label of HFpEF, and most expressed a need for more knowledge and understanding of this syndrome:
‘There are people in the heart failure world that don’t believe in it as a diagnosis.’
(C5)
Many patients had partial or incomplete knowledge, which often related to existing cardiac comorbidities; few patients provided a clear understanding of their HF:
‘No, they didn’t say, they said I’d got coronary heart disease, and that was as far as it went, and I’d got the atrial fibrillation, and that was it … I’ve never heard anybody refer to me as having heart failure.’
(P21)
Some clinicians viewed the emotive term ‘heart failure’ as a barrier to full disclosure of diagnosis, leading to the use of euphemisms. Others felt that HFpEF was more difficult to explain than HFrEF:
‘ [It’s] a challenge to try and explain [HFpEF] to patients, treatment feels a bit, sort of less clearly understood, less clearly targeted.’
(GP9)
Specialists emphasised the importance of diagnostic awareness but highlighted this could be difficult, requiring significant time and relational investment:
‘We will allow up to, sort of, 90 minutes to spend with the patient, so particularly those patients that have got a new diagnosis.’
(HFSN1, focus group)
While some patients accepted ‘failure’ was a negative term, they emphasised the importance of understanding and making sense of their diagnosis, and many expressed a desire to know more:
‘One of the things which I find a big problem with the services you get from the hospital and the doctor, they don’t tell you enough.’
(P34)
Management disparity
Findings from this study corresponded with the interrelated nature of the four generative mechanisms and constructs of NPT, and suggest that optimal management of HFpEF presupposes a high degree of coherence or sense-making work (Box 3). If clinicians and patients/carers are unclear about the differentiation of HFpEF or what the work around managing HFpEF involves, then deciding who does the work, how it is done, and how the work is monitored becomes problematic. Widespread management disparity represented by variability in service provision, uncertain roles and responsibilities, and gaps in care could be understood in this context. In contrast, systems were more established and clinicians were more confident in the context of HFrEF, which was conveyed by some primary care clinicians as routine practice.
Ongoing communication problems across the primary–secondary interface and issues relating to continuity of care appeared to be heightened because of uncertainties surrounding the identification and management of HFpEF.
Variability in service provision
The analysis revealed a differential service by ejection fraction in terms of the allocation of resources and access to services, which was complicated further by the problem of a variable provision for HF overall. Patients with HFpEF did not necessarily receive the same resources or opportunities as those with HFrEF, which was viewed as inequitable. Similarly, access to cardiac rehabilitation or exercise programmes was variable; other cardiac or pulmonary conditions appeared to be prioritised. This disparity was noted by primary care clinicians, who focused their responsibility on the incentivised identification and clinical management of patients with reduced ejection fraction:
‘They [GPs] don’t receive QOF [Quality Outcomes Framework] points or payments for that particular group of patients [patients with HFpEF] so I don’t think we actively seek them out.’
(PN4)
Some of these clinicians conveyed confidence in understanding, identifying, and treating patients with reduced ejection fraction. However, in the context of HFpEF, a sense of clinical inertia was conveyed in some patient and clinician accounts because of a lack of evidence-based practice and a feeling that there was little that could be done:
‘Why bother to have a label when you can’t do something about it?’
(GP7)
‘I’ve never called him [GP] out or anything because to be honest with you, I don’t think there’s anything that he can do, there’s nothing anybody can do, that’s what they’ve told me. So that’s what I’ve accepted.’
(P13)
Uncertain roles and responsibilities
Primary care clinicians without a cardiology background were unclear how a diagnosis of HFpEF influenced their clinical management of the patient’s condition, stating they would treat these patients the same as those with left ventricular diastolic dysfunction. Many lacked confidence and personal experience in managing this patient group and expressed a need for more education, clearer guidelines, and support from specialists:
‘I suppose it’s new for a lot of us, it’s new and there’s lots of unknowns in terms of what we do and then how and what we communicate, and not much official guidance or even support from secondary care.’
(GP3)
Details of specific HF self-management support strategies were infrequent in patients’ accounts. They were typically described as being provided by a specialist, yet were instrumental in ensuring individuals had some individual control over the day-to-day management of their HF in an increasingly stretched NHS:
‘I think you need to have the ability to self-care, you can’t rely on your GP for everything, and I think they’re pretty overworked, to be honest with you.’
(P11)
The data suggest patients with an incomplete understanding of their illness and treatment were more likely to misattribute HF symptoms to other causes, describe poor concordance with diuretics, or delay seeking help:
‘One thing, I’ve got one medicine [diuretic] I don’t understand why they give it to me. Because they’ve given me one of, for the urine, but I don’t know, so this morning I never took it because I go all the time.’
(P35)
GPs recognised the need to upskill but wanted to remain generalists who took a holistic view of the patient. Specialists were unclear how far their role should extend to other disciplines:
‘It’s very, it’s time consuming because you basically are doing the work for, I feel, tell me if I’m wrong, for some of the general.medical consultants, and your GPs because they don’t know what’s going on’
(HFSN2, focus group)
Limited capacity was conveyed as a barrier to the roles and responsibilities of generalists, specialists, and patients.
Gaps in care
Concerns about the availability and access of ongoing community management were expressed across patient and clinician accounts:
‘I think if I had to say, my observation of the health service is lack of continuity of care.’
(P44)
Several patients said they had not seen a specialist, and only a few spoke of direct access to HF services, typically in the form of HFSN support. Without the addition of more resources or improved collaboration with specialist services, clinicians were uncertain of the feasibility of ongoing monitoring for these patients in primary care:
‘You feel like when you’re discharging them, you’re discharging them into the unknown, whether the GP can manage to keep an eye on these people.’
(HFSN7)
Analysis indicated the nature of follow-up in primary care was, in part, dependent on HFpEF being identified and understood as a diagnosis; otherwise, these individuals may only be seen in long-term reviews where HFpEF may not be visible or actively managed:
‘Every time I’ve been to the doctor since, nobody’s spoken a word about my heart at all. It’s either been about my knee or about my diabetes.’
(P24)
Gaining timely access to GPs was often viewed as problematic; patients emphasised the value of relational continuity, something they felt was increasingly challenging to attain with resource constraints, larger practices, and transient GPs/locums. Patients who reported inadequate access to or poor relationships in primary care were likely to bypass it in favour of other services, such as emergency departments:
‘First, you’ve got to get through the wall of the receptionists you know, and then you’ve got, if you’re lucky, you get one [appointment] a fortnight in advance. Unless you sort of go there and collapse on the floor, and say, “I think I better see a GP” … what I did was, I took myself to the A&E [accident & emergency] … and before you’ve got to the GP, you’re already back in the hospital anyway.’
(P17)
GP access to specialist services was variable, yet viewed by clinicians as necessary to help avoid hospital admissions, ensure optimal clinical management, and incentivise primary care to take on more responsibility for long-term follow-up:
‘It’s just having that access really, that rapid access that’s available and, sadly, you know when things go wrong, I think, or potentially if they got an intervention by a specialist or got some advice from a specialist early, you can often avoid these kinds of sometimes very extreme outcomes.’
(GP19)
Ongoing communication problems across the primary–secondary interface were reported, with a continuing need for more coordination, improved relationships, and an investment in unified IT systems. Patient and clinician accounts suggested communication problems were heightened in the management of HFpEF, often involving multiple specialties and lacking visibility, understanding, or consistent labelling of the condition. Reports conveyed a reliance on patients and family members to coordinate care, which was problematic when a clear understanding of their heart problem was lacking:
‘I think most of the time, the patient is quite happy being the coordinator in a way … because often it’s only the patient who knows who’s involved. I mean we’re terrible at communicating with each other.’
(Other HP1)
Clinicians acknowledged that this approach was not ideal and was increasingly problematic in an ageing population:
‘I think, particularly in the elderly population, you can’t necessarily rely on, you know, that they’ve definitely picked up that they need their blood test and when or whatever.’
(GP21)
