Practice nurses and GPs are being urged to talk to patients about their family history of heart disease by a charity, in the wake of latest survey results.
Cardiomyopathy UK said its research found that 31% of survey participants had never been asked by a healthcare professional if they have a history of heart problems or diseases within their family.
“It’s essential that healthcare professionals and families start talking to each other”
The survey was conducted on behalf of Cardiomyopathy UK during October this year and included 2,040 people aged 16 or over.
It indicated that 22% of people with cardiomyopathy in their family had never had a health check, and 20% of people with a family history of heart disease admitted they have never told their GP about it.
The survey also suggested that 71% of the UK population did not know that cardiomyopathy could be genetic, 54% did not know if they have a history of heart disease in the family, and just 12% of patients were aware there was more than one type of cardiomyopathy.
The charity noted that cardiomyopathy affects more than 160,000 in the UK and that one in three people was initially misdiagnosed with early warning signs being mistaken for asthma or anxiety.
Cardiomyopathy UK highlighted that its new Know Your Heart Story campaign, which was launched on 1 November, encouraged clinicians and patients to understand their family history of heart disease and recognise the symptoms to look for.
These included breathlessness, tiredness, swollen ankles or tummy, palpitations, dizziness or fainting, and chest pain.
“It is paramount that appropriate referrals are made to the specialist services”
Joel Rose, chief executive of Cardiomyopathy UK, said it was “essential” that healthcare professionals and families started “talking to each other about heart disease”.
“Sudden cardiac deaths can only be prevented if people at risk are identified,” he said. “We are encouraging anyone with symptoms of cardiomyopathy or a family history of heart disease to speak to their GP or practice nurse.
“Young people are the biggest losers in the diagnosis lottery as they don’t conform to a ‘typical heart patient’ so they are often misdiagnosed, and their cardiomyopathy symptoms are often attributed to something else like asthma,” he noted.
“Too many people have died suddenly from this disease,” he said. “We all need to abandon our preconceptions and stereotypes of what a patient with a heart condition looks like.
“Family history is a crucial indicator of risk, and we all need to take action and start talking more for this to change,” added Mr Rose.
Tootie Bueser, a cardiac genetics nurse at both King’s College Hospital NHS Foundation Trust and Guy’s and St Thomas’ NHS Foundation Trust, told Nursing Times it was “paramount” that appropriate referrals were made to specialist services.
Ms Bueser highlighted that there were specialist inherited cardiac conditions clinics for those affected by cardiomyopathies.
Practice nurses urged to explore patient family history of heart disease
“These are run by multi-disciplinary teams who can look at the medical aspects of the condition, provide genetic counselling and testing – if appropriate – and give psychological support,” he said.
“Much more can be done so that these clinics are utilised more effectively,” she told Nursing Times.
“This includes facilitating better communication amongst patients and their family members and increasing knowledge and awareness amongst health professionals about cardiomyopathies, particularly in terms of symptoms associated with the condition,” she said.
She added: “With an estimated prevalence of one in 500 at risk for cardiomyopathies, it is paramount that appropriate referrals are made to the specialist services so that patients and their families do not miss out on getting comprehensive care.”