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Patients with ‘hidden heart failure’ miss out on care and treatment because health professionals often misunderstand their condition.

New research from the Primary Care Unit explores the recollections of ‘hidden heart failure’ patients and their carers, focusing on their encounters with health professionals. Patients and carers described widespread misunderstanding in the health and care services that the patients were in contact with, leading to limited access to care and support. There was deterioration in the health of patients that might have been slowed or even prevented if they had received help.

The common but little-known type of heart failure called Heart Failure with preserved Ejection Fraction, or HFpEF (pronounced heffpeff) is sometimes called ‘hidden heart failure’. It’s harder to recognise, diagnose and treat than other forms of heart failure.

The research team analysed interviews with 77 HFpEF patients, from three different geographical areas across England, alongside accounts from 16 carers.

Around half of the people diagnosed with heart failure each year in the UK are thought to have HFpEF. Like other forms of heart failure, the condition can shorten lives and cause years of ill health. Just like other heart failure patients, people with HFpEF have to cope with breathlessness, fluid retention and fatigue, as well as with other symptoms and frailties they may have at the same time.

But the new research shows that HFpEF carries less importance, significance and priority than other life limiting conditions and other forms of heart failure.

Patients keep saying that it’s a constant struggle to handle all the jobs they have to do because of HFpEF and the other conditions or frailties they might be living with. They are understanding about staffing and resource limits in the services they need but they consistently talk about experiences they have where the systems of care are not supportive of their condition”. – Faye Forsyth, PhD Student, Primary Care Unit, University of Cambridge

Please don’t let me be misunderstood

Patients reported that the messages they received during health consultations led them to believe that HFpEF is a benign condition, which also lacks evidence-based treatment. These misconceptions blocked access to services and caused inaccurate messages to be shared about the severity of the condition and the potential for improvement.

The researchers found that sometimes HFpEF wasn’t suspected and symptoms were linked to aging or other concurrent diseases. Even after diagnosis, the patients in the study acquired inaccurate information. They received the message that ‘HFpEF is not that bad’ so there is no need to worry or make changes. Or they thought that ‘nothing can be done’ because there was a perceived lack of treatment options.

Patients sometimes associated lack of treatment and care with ‘lack of empathy’, and this sometimes undermined participants’ legitimacy as a patient with a need for treatment.

One patient, aged 81, said “He [heart failure specialist nurse] said to me … you don’t know how lucky you are because […] your heart condition […] is not to such a degree that you would normally merit a heart failure nurse”.

Missed opportunities

Early identification and pro-active steps to improve diet and physical activity rates, for example, can prevent or delay the progression of HFpEF. But very few participants received specialist input from a heart failure service or were referred to rehabilitation, as European and UK guidelines suggest they should have been.

One woman, aged 76, said: “I enquired was I eligible for it [cardiac rehabilitation] and somebody, and I don’t know who, said they didn’t think so…I didn’t fit the criteria”.

Spiralling complexity

As patients experienced the increasing demands of life with HFpEF, often alongside other health problems, their independence and quality of life often got worse. Meanwhile their often time-consuming interactions with healthcare services rarely resulted in improvement.

Patients described additional barriers to comprehensive care because their condition does not have a clear and well understood profile. In fact, there were many examples of unnecessary tolls on life which could have been alleviated through appropriate guidance in self-care.

Some patients described a ‘tipping point’, when patients’ capacity to manage was overwhelmed. The spouse of one patient explained: “It’s [HFpEF] affected everything…He was a man who had loads of hobbies… he had a workshop…and played golf and went away fishing for weekends. All that’s gone.”

HFpEF lacks a coherent ‘illness identity’ shared amongst clinicians and patients. People with HFpEF appear to experience additional barriers to comprehensive care through deficient illness identity. This is, at least in part, why we see patients experiencing greater inequalities in care, over and above those reported by people with other forms of HF.” – Professor Christi Deaton, Professor of Nursing, University of Cambridge

Changing misconceptions about HFpEF

HFpEF is a life-limiting disease with high rates of repeated hospitalisation and potential for low quality of life. Clinical practice is at least partly driven by guidelines, so reframing HFpEF within clinical guidelines would be a useful start to prompting the re-organisation of care.

The existing evidence shows that interventions designed to support physical activity can help patients improve. Even in the most physically compromised people, capacity gains are possible when the right rehabilitation or support is available. There are also potential benefits from drug therapies and from coping and self-care strategies.

Funded by the National Institute of Health and Care Research School for Primary Care Research, the Burdett Trust for Nursing and the Evelyn Trust.

Read the research

Faye Forsyth, Thomas Blakeman, Jenni Burt, Carolyn A Chew-Graham, Muhammad Hossain, Jonathan Mant, John Sharpley, Emma Sowden, Christi Deaton: Cumulative Complexity: A qualitative analysis of patients’ experiences of living with heart failure with preserved ejection fraction European Journal of Cardiovascular Nursing. 08 September 2022. 

This research was supported by funding from the National Institute for Health and Care Research School for Primary Care Research (OPTIMISE HFpEF study) and personal awards from the Burdett Trust for Nursing and Evelyn Trust (F.F.).

Our thanks to Primary Care Unit - University of Cambridge, for allowing SPCR to republish this article. You can read their briefing on HFpEF research on their website.