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Heart Failure With Preserved Ejection Fraction Broadly Misunderstood

Better identification, shared understanding and greater awareness of heart failure with preserved ejection fraction (HFpEF) is needed to avoid missed opportunities for treatment, according to a study exploring clinician and patient perspectives and experiences of the condition.

Published in the first edition of the online version of the British Journal of General Practice, the research found there were challenges in the diagnosis and management of HFpEF such that patients may not get the support and treatment they need.

"Our research paints a picture of a cloud of clinical uncertainty surrounding the diagnosis and treatment of HFpEF, which often leads to a failure to manage the condition,” said lead author, Emma Sowdon, PhD, from the University of Manchester in a news release to accompany the publication. "Patients' descriptions of their diagnoses suggest they are far more convoluted than the clinical guidelines spell out, leading to a protracted series of hospital admissions or specialist visits.”

‘There is a need to raise public and clinical awareness of HFpEF and develop a clear set of accepted practices concerning its management,’ write the authors.

HFpEF is Common

Roughly half of all people with heart failure have HFpEF (previously referred to as diastolic heart failure or ‘stiff heart syndrome’), compared to reduced (≤40%) left ventricular ejection fraction (HFrEF). Most commonly found in older people (particularly women) with a history of hypertension, obesity, and diabetes mellitus, patients are usually managed in primary care, sometimes in collaboration with specialists, but evidence-based treatments are lacking.

Symptoms include shortness of breath, swelling in the legs, ankles, feet or in the lower back or abdomen, and extreme tiredness. It affects half of the 920,000 people in the UK with heart failure but frequently goes undiagnosed.

Dr Sowdon and colleagues carried out the qualitative research study to gauge the perspectives and experiences of patients, as well as primary and secondary care clinicians, with a view to informing the improvement of care.

In total, 50 patients, 9 carers/relatives, and 73 clinicians were recruited from NHS primary and secondary care settings in the east of England, Greater Manchester, and the West Midlands. Semi-structured interviews and focus groups were designed to explore participants’ understanding and experience of managing HFpEF, to help identify potential barriers to care.

Challenges

Key findings identified as important in influencing the management of HFpEF included difficulties with diagnosis, unclear illness perceptions, and management disparity. Professional scepticism and a need for greater education was recognised by clinicians, as well as unclear roles and responsibilities, and uncertainty about best practice. Many patients expressed limited understanding and awareness of the condition.

Regarding diagnosis, the researchers report that three main factors were influential in preventing timely differentiation of HFpEF: these were the challenge of a ‘normal echo’ result, variability in referral pathways and specialist input, and a convoluted pathway to diagnosis (the HFpEF maze).

With respect to the challenge presented by the echocardiogram reading, the authors noted that, ‘Many GPs emphasised that they were not trained to evaluate echocardiogram reports; they often relied on summaries or conclusions provided within them, which were viewed as variable in quality.’

One non-specialist clinician was quoted as saying, "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."

The authors write that, systems of care were not developed consistently or systematically to differentiate this condition compared with HFrEF. ‘Clinicians and patients often portrayed the diagnostic process as problematic, complicated by non-specific symptoms, comorbidities, and variability in service provision.’

Regarding the convoluted pathway to diagnosis (the HFpEF maze), participants are reported as saying, ‘Often people have been batted from, they’ve gone through a lot of different clinics, and no-one’s really given them a diagnosis.’

Diagnosis Difficulties

Christi Deaton, PhD, chief investigator from the Department of Public Health and Primary Care at the University of Cambridge commented on the issues around diagnosis in a press release. "We heard some clinicians asking: what’s the point of diagnosis if there is no specific treatment? But identification of HFpEF is critical if we are going to develop new treatments and ways for patients to better manage their condition, and there are actions that we can take now."

With respect to unclear illness perceptions, patients and clinicians readily admitted the confusion around terms and understanding. One clinician is reported as saying, ‘There are people in the heart failure world that don’t believe in it as a diagnosis.’

While a patient demonstrated partial or incomplete knowledge, and said, ‘…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.’

In terms of management disparity, the analysis revealed differences in service provision 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 heart failure overall. One clinician was reported as saying: ‘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.’

There was also a lack of clarity and confidence on the part of primary care clinicians in managing this patient group. ‘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.’

Published in the November 3, 2020 online version of British Journal of General Practice.

COI: The authors declare no competing interests.

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