Findings from four year research programme on heart failure with preserved ejection fraction
Half of the one million or so people with heart failure in the UK have a condition known as heart failure with preserved ejection fraction (HFpEF). Research led by Professor Christi Deaton at the University of Cambridge over the last four years reveals a lack of knowledge about HFpEF in primary care and vividly describes a protracted diagnostic process frustrating to patients and clinicians and detrimental to patient health.
The research exposes the disparity in management and access to specialist services that HFpEF patients experience, compared to patients with heart failure with reduced ejection fraction (HFrEF). The research team are working with healthcare providers and patients to develop proposals to improve the diagnosis of HFpEF and the management of patients with the condition.
This Primary Care Unit Research Briefing pulls together findings from the different components of the study and summarises their implications. Read this briefing as a feature in Adobe Spark
What the research tells us + Research components + Implications and proposals + Next steps + Investigators and collaborators + Funding + References
The research, called Optimise HFpEF, began in 2017 and used a range of methods to explore diagnosis and management in primary care and specialist services and to determine the needs, challenges and outcomes faced by community patients with HFpEF. The Optimise HFpEF team was a multiprofessional collaboration across the Universities of Cambridge, Oxford, Manchester and Keele. A full list of investigators, collaborators and funding is at the end of this briefing.
About heart failure
Heart failure, a clinical syndrome caused by a structural and/or functional cardiac abnormality, is characterised by symptoms and signs such as breathlessness, tiredness and swelling of ankles and legs .
This research is about HFpEF (heart failure with preserved ejection fraction), which is a type of heart failure that is associated with the inability of the left ventricle to relax properly. HFrEF (heart failure with reduced ejection fraction) is a better understood type of heart failure that occurs due to the inability of the left ventricle to contract properly.
Half of those with heart failure will have HFpEF, and prevalence is increasing due to people living longer with comorbid conditions such as hypertension and diabetes, rising obesity rates, and sedentary lifestyles [2,3].
Heart failure is reported to account for 1-2% of all hospital admissions: after diagnosis patients are hospitalised on average once per year, and 30-day readmission rates are 20-25% . The latest heart failure audit in the UK for 2018/19 noted that hospital admissions for all types of heart failure were up by 21% compared to the previous year, and hospitalisations for patients with HFpEF are also increasing [2,4].
What the research tells us
Despite its prevalence, HFpEF remains poorly understood amongst patients and healthcare providers.
This research confirms that HFpEF is sometimes difficult to diagnose and lacks specific pharmacotherapy shown to reduce mortality and morbidity (although this is changing). HFpEF patients often lack access to care pathways designed for patients with HFrEF.[5-7]
Patients with HFpEF in primary care are difficult to find using practice records, confirmation of diagnosis can be challenging, and the common phenotype among these patients is of an older symptomatic group with multiple comorbid conditions, functional impairment, and a high proportion of pre-frailty/frailty.
Patients emphasised the difficulties of getting a diagnosis, getting useful information, and receiving treatment :
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”.’ (Patient)
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.’ (Patient)
Healthcare providers generally agree that identifying and coding for type of heart failure (e.g. HFpEF) should be required, that more detail in echocardiogram reports including specifying evidence for HFpEF would be useful, and that better collaboration between primary care and specialist services is needed for these patients .
Optimise HFpEF was designed to investigate the current reality of HFpEF diagnosis and management aiming to develop an optimised programme that is informed by the needs and experiences of people with HFpEF and healthcare providers . This section introduces each component of the study alongside key findings from that component.
Systematic review of heart failure disease management programmes tested in patients with HFpEF (Prospero: CRD42017067980). Not surprisingly we found a limited number of studies, and heterogeneity in samples (HFpEF variably defined), interventions and outcomes.
Key finding: A single disease focus may be of less benefit to patients with HFpEF who are frequently multi-morbid, and programmes should be tailored to HFpEF .
Qualitative interview study to determine patient and health professionals’ preferences, perspectives on burden of illness and treatment, care requirements, and organisation of services and/or support in HFpEF. We interviewed 50 patients, 9 carers and 73 healthcare providers (HCPs) from 26 primary care practices and 5 hospitals in the Northwest, Midlands and East of England.
Key finding: Our research highlighted the protracted process of diagnosis for many patients, lack of awareness in primary care, unclear illness perceptions and disparity in management for patients with HFpEF Patients reported that HFpEF is a debilitating condition that carries a heavy burden in terms of time and effort to manage it. Patient work and ability or support to perform this were often complicated by a lack of understanding around HFpEF, and lower priority within healthcare settings [7,11, 12].
Prospective longitudinal observational cohort study that identified probable HFpEF patients, confirmed HFpEF status, characterised the cohort at baseline, and prospectively followed confirmed HFpEF cases for 1 year.
Key findings: Our baseline results confirmed that finding patients with likely HFpEF from primary care is challenging, as is diagnosis in multi-morbid older patients with different types of heart failure . The 61% confirmed to have HFpEF were more likely to have symptoms, be obese, female, frail and more functionally impaired . Activity levels were low, and the factors associated with low activity levels were slower gait speed, lower anxiety, higher levels of depression, a past smoking history, a confirmed HFpEF diagnosis and higher body mass index .
Qualitative interview sub-study employing a thematic analysis approach to explore hospitalisation in HFpEF patients, transitions of care, and their carers’ perspectives. We recruited additional patients and carers to add to those initially recruited.
Key findings: This analysis illustrated the complexity of caring for someone with HFpEF, likened to keeping multiple plates spinning. While similar in many ways to care of a patient with any type of heart failure, it was further complicated by a lack of information and support from specialist services, and limited engagement with heart failure self-care activities .
COVID-19 sub-study: During the pandemic we interviewed patients with HFpEF and healthcare providers involved in our earlier studies.
Key findings: We found that patients were very fearful of Covid-19, and this affected their behaviour with many either striving to improve their health or withdrawing and reluctant to access healthcare to protect themselves, potentially risking a deterioration in their health status. For some patients, it was difficult to decide what to do as they were unsure as guidance about shielding was not clear for heart failure. Clinicians changed activities in their practices such as using remote consultation by telephone or video link rather than in person visits. Providers worried about those with HFpEF during the pandemic who had been reluctant to access healthcare, and what their needs would be when they began returning to practices. Some changes in behaviour and practice were positive and should be sustained, others need further evaluation .
Questions posed to healthcare provider stakeholders to gauge consensus, explore disparity, identify sticking points, and elicit ideas for improving management.
Key finding: Among 66 healthcare providers responding, there was widespread agreement that the type of heart failure should be determined and become a Quality Outcomes Framework indicator, and that echocardiogram reports should indicate if there’s evidence for HFpEF. Although most thought HFpEF should be managed in primary care, there was wide support for diagnosis and initial management in specialist centres. There was less consensus around thresholds for natriuretic peptides in diagnosis, and the use of additional testing (stress echocardiogram, Magnetic Resonance Imaging) when diagnosis was uncertain .
Greater awareness of and information about HFpEF is needed for patients and healthcare providers:
Patients with HFpEF in primary care are older, have multiple comorbidities, frequent geriatric syndromes such as frailty, and functional impairment;
A multimorbid approach to HFpEF with collaboration between primary care and specialist services should be implemented rather than a single-disease focus.
Priority proposals to improve diagnosis and management pathways for people with HFpEF
Guidance for interpretation of natriuretic peptide levels by patient characteristics to be developed;
Parameters (e.g. diastolic function, structural abnormalities) for HFpEF to be consistently measured on echocardiogram reports and an interpretation provided;
Specialist services to provide diagnostic confirmation and management plans for HFpEF;
Multidisciplinary teams to actively include primary care HCPs;
Rapid virtual consultations to be made available between specialists and primary care.
The research team is now planning to take a systems approach to consider how to improve diagnosis and management of HFpEF. The work programme will be informed by further consultation with patients, healthcare providers, researchers, administrators and policy makers to discuss potential changes and interventions that could be tested in practice.
Cambridge: Susana Borja Boluda, James Brimicombe, Joseph Cheriyan, Christi Deaton, Duncan Edwards, Faye Forsyth, Navazh Jalaludeen, Jonathan Mant, Efthalia Massou, Mark Pilling.
Oxford: Affan Aziz, FD Richard Hobbs, Aaron Long, Heather Rutter, Hannah Swayze, Clare J Taylor
Keele: Carolyn Chew-Graham, Mohammad Hossain
Manchester: Tom Blakeman, Emma Sowden
Guy’s and St. Thomas Hospital: Rebekah Schiff
West Suffolk Hospital: M Justin Zaman
Dr Mollika Chakravorty, Dr Sophie Maclachlan, Dr Edward Kane, Dr Jessica Odone, Dr Natasha Thorley, Dr Ian Wellwood, John Sharpley, Dr Brain Gordon, Joanna Taffe, Dr Chris Schramm, Sine MacDonald, Dr Helena Papworth, Dr Julie Smith, Dr Craig Needs, Dr David Cronk, Dr Chris Newark, Dr Duncan Blake, Dr Alistair Brown, Dr Amman Basuita, Dr Emma Gayton, Dr Victoria Glover, Dr Robin Fox, Dr Jonathan Crawshaw, Dr Helen Ashdown, Dr Christine A’Court, Rachael Ayerst, Dr Basilio Hernandez-Diaz, Dr Kyle Knox, Dr Nick Wooding, Dr Shamila Wanninayake, Dr Christopher Keast, Dr Adam Jones, Dr Katherine Brown, Dr Matthew Gaw, Dr Nick Thomas, Dr Sharon Dixon, Dr Elisabetta Angeleri-Rand
This work was supported by the National Institute for Health Research School for Primary Care Research (NIHR SPCR) [grant number 384], the NIHR Cambridge Biomedical Research Centre (BRC-1215-20014) and conducted at and supported by the NIHR Cambridge Clinical Research Facility. Additional funding and support was received from the Addenbrookes Charitable Trust, British Heart Foundation Centre for Research Excellence and THIS.Institute. The views expressed are those of the authors and not necessarily those of the NIHR, the NHS, or the Department of Health and Social Care. The study sponsors were not involved in any aspect of the study including study design, data collection, data analysis, and interpretation of data.
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- Forsyth F, Brimicombe J, Cheriyan J, Edward D, Hobbs FDR, Jalaludeen N, Mant J, Pilling M, Schiff R, Taylor CJ, Zaman MJ, Deaton C. Diagnosis of Patients with Heart Failure with Preserved Ejection Fraction in Primary Care: Cohort Study. ESC Heart Failure. 2021 (in press)
- Forsyth F, Brimicombe J, Cheriyan J, Edward D, Hobbs FDR, Jalaludeen N, Mant J, Pilling M, Schiff R, Taylor CJ, Zaman MJ, Deaton C. Characteristics of Patients with Heart Failure with Preserved Ejection Fraction in Primary Care: Cross-sectional Analysis. BJGP Open. 2021 (in press).
- Lin H, Hartley P, Forsyth F, Pilling M, Hobbs FDR, Taylor CJ, Schiff R, Deaton C on behalf of the Optimise HFpEF investigators. Clinical and demographic correlates of accelerometer-measured physical activity in participants enrolled in the OPTIMISE HFpEF study. European Journal of Cardiovascular Nursing. 2021 10.1093/eurjcn/zvab028
- Pearson CR, Forsyth F, Khair E, Sowden E, Deaton C. ‘Keeping the plates spinning’. A qualitative study of the complexity, barriers and facilitators to caregiving in Heart Failure with preserved Ejection Fraction (HFpEF). European Journal of Cardiovascular Nursing. 2021; 20, Suppl 1: https://doi.org/10.1093/eurjcn/zvab060.042
- Forsyth F, Sowden E, Hossain M, Tuffnell R, Blakeman T, Chew-Graham C, Deaton C. Clinicians’ and patients’ experiences of managing heart failure during the COVID-19 pandemic. BJGP Open. 2021: DOI: https://doi.org/10.3399/BJGPO.2021.0115
Images (top to bottom): Randgruppe (Nico Franz) via Pixabay, sbtlneet (Raman Oza) via Pixabay
Contact: Lucy Lloyd, Communications, Primary Care Unit