As the heart of the cardiomyopathy community, we run our own non-clinical research to campaign for better understanding. The findings are used to inform policy work and make sure that the services we offer make a meaningful impact.
You can read about some of our recent research projects below.
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 to 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 effected 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 (talking to someone who has experienced something similar) and led us to develop our own support services as well as to secured 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 individuals care and treatment plan.