Our Research | Cardiomyopathy UK

Cardiomyopathy UK aims to promote and support research that leads to improved access to quality care for people living with cardiomyopathy and their families. By supporting research, we can gather the evidence we need to bring about changes in prevention, diagnosis, treatment, support, wellbeing and social care.

By bringing health professionals, researchers, patients, families and friends together, we ensure everyone’s voices are heard.

Our 2022 National Survey

Our survey aims to give us an up-to-date picture of the cardiomyopathy experience since COVID 19 and the change that the pandemic has had on diagnosis, treatment, well-being, and daily life. This helps us to gain the knowledge and evidence we need to influence change with policy makers and health service providers on your behalf.

The survey has now closed, and a detailed analysis of the results is being undertaken. Thank you for everyone who has participated in this research. We have had over 600 responses which we hope will provide a clear picture of what matters to our community and where improvements in care are needed most.

Face-To-Face and Remote Appointments

Since the start of the COVID-19 pandemic there has been an increase in the number of people offered remote (video or telephone) appointments. We want to learn more about what people thought about these remote appointments so we can advise the people who manage and run cardiomyopathy services, and advise on how best to use these in the future.

Here are our findings so far:

There is a strong preference for face-to-face appointments, with 69% preferring this option. 23% of respondents stated it "depends"
The depending factors were how soon the appointment would be, who it would be with and how a person was feeling about their condition
People who have a good relationship with their healthcare team are more comfortable with remote appointments.
Age does seem to have some impact on attitudes towards remote appointments

It is important to offer people the choice of appointment type and to establish a good relationship with patients so they feel more comfortable. This feedback will be shared with healthcare professionals and service managers.

Diagnosis and Treatment Experiences of People With Cardiomyopathy

In 2019 we wanted to identify what was/wasn't working and to inform our policy work, looking at 'real life' experiences compared to the ideal care and treatment pathway.

We found that:

73% of people did not think that their initial symptoms were a heart problem
20% of people were asked by their doctor is they had any family history of heart disease
28% of people were initially diagnosed with another condition- most often this was asthma or anxiety
37% of people had not been offered genetic testing

We used the feedback to develop our Change Agenda. We now work closely in partnership with organisations such as the Alliance for Heart Failure to increase awareness of cardiomyopathy and heart failure among GPs.

Cardiomyopathy and Emotional Wellbeing

In 2016 we ran a national survey focusing on the full extent of emotional and mental health in those diagnosed with cardiomyopathy.

We found that:

Almost everyone with cardiomyopathy and their loved ones said that the condition affected their mental health
60% of people wanted to discuss their mental health with a healthcare professional but did not feel able to do so
Over a quarter of people with cardiomyopathy had not talked to a loved one about their mental health
The mental health impact of cardiomyopathy is just as significant, and sometimes more, on partners of people with cardiomyopathy

The survey showed the importance of peer support and led us to develop our own support services, as well as to secure funding to expand our support group network. We also used the findings of this survey to show service managers in the NHS the importance of integrating mental health support into an individual's care and treatment plan.

Take Part in Research

We are keen to involve our community in our 'take part in research' network which offers individuals the opportunity to get involved in research in different ways. Including, answering questionnaires, reviewing patient information leaflets, sitting on steering groups and participating in research. Through Heart Hive our community can also access other research engagement opportunities around the UK.

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