Thank you for taking the time to help us with our Advanced Heart Failure project. This survey should take approximately 15 minutes to complete.
We will ask you a few pre-survey questions and then you will find a list of possible research questions we would like you to pick your top 10 from.
What are we doing?
We are asking people who are affected by advanced heart failure, their families, friends and health and social care professionals who look after heart failure patients to help us identify the top ten questions that they want answered by heart failure research. This will help guide heart failure research and make sure that researchers focus on the needs of people living with the condition.
We have already sent out a survey asking people what questions they have about advanced heart failure. This is how the questions you will be asked to prioritise have been generated.
We will then be looking at the questions everyone has prioritised and choosing the top 20-25 questions and taking them to a workshop in February, where people with heart failure, families and health and social care professionals will then prioritise these back down to the top ten questions.
We will share the results of this project as widely as possible with groups that fund and carry out research. We will also inform the charities that work with people affected by advanced heart failure.
What is heart failure?
Heart failure doesn't mean your heart has stopped working – it just needs some support to help it work better. It can happen at any age, but is most common in older people. Heart failure means the heart is unable to pump blood around the body well enough, which can lead to symptoms of breathlessness, palpitations, ankle swelling and fatigue.
We want to find out what research is needed for people with ‘advanced’ heart failure. For this project our definition is a person with a known diagnosis of heart failure who has symptoms, such as breathlessness, which impact on what they are able to do, require them to take lots of medications or go into hospital.
This is an opportunity for you to help
If you are a person with heart failure, or look after someone with heart failure, we would like to hear from you.
Who are we?
We are a group of patients, carers, care professionals and researchers who want to find out what research is needed to help people with heart failure living in the community. This work is supported by an organisation called the James Lind Alliance.