Where is all the heart failure? A community study.
Research type
Research Study
Full title
Where is all the heart failure? A community study.
IRAS ID
325130
Contact name
Elton LC Luo
Contact email
Sponsor organisation
Hull University Teaching Hospitals NHS Trust
Duration of Study in the UK
2 years, 0 months, 0 days
Research summary
One of the puzzles of heart failure (HF) in the UK is that whilst epidemiological studies suggest that the prevalence of HF is somewhere between 1.5 and 3% of the population, Quality and Outcomes Framework (QOF) registers in primary care record a prevalence of less than 1%. The reasons for the discrepancy are unclear, but either the epidemiology is incorrect, or QOF registers are missing a substantial proportion of patients. Planning and delivering HF services are thus made difficult.
We believe the epidemiological research is correct: there is a large proportion of “missing” patients who have heart failure, the majority of whom are treated unknowingly with loop diuretics. A related issue is that the diagnosis of transthyretin amyloidosis (ATTR) cardiomyopathy has only recently become straightforward to diagnose using a nuclear imaging test. Far from being the rarity that many clinicians suppose it to be, ATTR cardiomyopathy may, in fact, be common, and may be the cause of many cases of unrecognised HF.
We also believe that a proportion of patients are "mislabelled" as having heart failure – they would carry the diagnosis of “heart failure with normal ejection fraction” (HeFNEF; sometimes also referred to as “heart failure with preserved ejection fraction”, HeFpEF), an ill-defined entity, known to encompass large numbers of patients with conditions other than heart failure causing their symptoms.
Our study, funded by the British Society for Heart Failure, will involve scanning primary care electronic health records of patients registered in the Beverley Primary Care Network, a collaborating group providing primary care services for approximately 50,000 patients. With a comprehensive approach, we aim to cleanse their HF registry. We will assess the prevalence of missed and mislabelled HF, and identify (and treat) patients with previously unrecognised HF.
REC name
North West - Greater Manchester South Research Ethics Committee
REC reference
23/NW/0278
Date of REC Opinion
15 Dec 2023
REC opinion
Further Information Favourable Opinion