A major study investigating the diagnosis and outcomes of more than 400,000 people with heart failure over the past 20 years has found that diagnostic investigations in primary care were below guideline standards.
The study, carried out by Leicester researchers, also found little improvement over the two decades, and widening inequalities among patient groups.
The National Institute for Health and Care Research (NIHR) and British Heart Foundation funded research, published in The Lancet Primary Care on 26th November, analysed the records of 412,173 people with newly diagnosed heart failure in England between 2000 and 2021.
The research showed that most patients experienced symptoms such as breathlessness, ankle swelling, or fatigue, or were prescribed loop diuretics, in the years before diagnosis. Yet, despite these early warning signs, nearly half were not diagnosed until an emergency hospital admission, often when the condition had become severe.
Current clinical guidelines recommend that patients with suspected heart failure receive natriuretic peptide testing followed by specialist review and echocardiography when results are abnormal. The findings suggest that many patients did not receive these essential tests, delaying diagnosis and treatment.
Between 2015 and 2019, only 12% of symptomatic patients underwent a natriuretic peptide blood test, 20% had an echocardiogram, and 34% were referred to a heart specialist before diagnosis.
Over half had no diagnostic investigations recorded in primary care at all.
The study also uncovered substantial inequalities. Women, those living in more deprived areas, and patients with multiple long-term conditions experienced up to five times longer diagnostic delays and were less likely to receive recommended investigations. These groups together with South Asian patients were also more likely to be diagnosed in hospital.
Dr Claire Lawson, NIHR Advanced Fellow and Associate Professor at the University of Leicester, said: “Heart failure is frequently diagnosed late, often only after patients are admitted to hospital with severe symptoms or complications. Our findings show that this is not just a story of delayed diagnosis, but of inequality.
“Women, people living with multiple long term health conditions, and those living in more deprived communities are systematically less likely to receive timely investigations.”
She added: “We need to strengthen early detection in primary care and ensure that all patients, regardless of background, have equitable access to diagnostic tests and specialist referral. These are essential steps towards improving survival and reducing pressure on hospitals.”
The study also found that patients diagnosed in hospital or without prior diagnostic investigations had significantly worse survival than those diagnosed and investigated in primary care. Mortality was lowest among outpatients who received investigations in primary care and up to five times higher among inpatients who had been on long-term diuretics but received no prior testing.
Professor of Primary Care Diabetes and Vascular Medicine at the University of Leicester, Kamlesh Khunti, who was an author on the study, added: “This research shows there are clear opportunities to detect heart failure earlier and save lives. We urgently need to address the gaps and inequities in diagnosis to ensure that no group is left behind.”
Building on these findings, researchers at the University of Leicester are now developing and testing THINK-HF, a digital clinical decision support tool designed to help GPs identify patients at risk of undiagnosed heart failure earlier.
The tool uses electronic health record data to flag combinations of symptoms, medications, and risk factors that may indicate hidden heart failure.
A national feasibility trial is now underway to assess how the tool can be integrated into routine primary care systems and improve early detection pathways.
Dr Claire Lawson is funded by the NIHR Leicester Biomedical Research Centre (BRC) and this research was supported by the NIHR Research for Patient Benefit Programme, the British Heart Foundation and the NIHR Applied Research Collaboration East Midlands.
The NIHR Leicester BRC is part of the NIHR and hosted by the University Hospitals of Leicester NHS Trust in partnership with the University of Leicester, Loughborough University and University Hospitals of Northamptonshire NHS Group.
More information about the work of our Cardiovascular theme.