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People with advanced heart failure, their carers, families and friends are being asked to help set the priorities for future research into the condition.

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“Once the priorities have been set, they will be shared widely with researchers and funders so that they can have the biggest impact on advanced heart failure research in the future.”
- Dr Rachel Johnson

NIHR School for Primary Care Research researchers from the Universities of Oxford, Bristol and Cambridge are working with the James Lind Alliance - a non-profit organisation which looks for unanswered health research questions by reaching out to those most affected - to identify research questions that will focus on improving advanced heart failure care.

Heart failure affects one in 100 adults in the UK.  It places a heavy burden on both patients and their families which often increases with time. A person with advanced heart failure experience unpleasant symptoms and can have a reduced life expectancy. It can stop them from getting on with their lives, requires taking lots of medicines and can involve going into hospital.

The group launched a survey  on Tuesday 12 June, inviting people who are affected by advanced heart failure to send them the most important questions that they want answered by research.

The invitation is for patients with advanced heart failure, their families and friends, as well as health and other care professionals who look after them.

The results of the survey will help guide researchers to focus on the needs of people living with advanced heart failure.

Dr Rachel Johnson co-lead of the project, a GP and Research Fellow at the University of Bristol’s Centre for Academic Primary Care, said:

“Advanced heart failure can cause great difficulties for patients and their families. It can affect all areas of their lives. For health and other care professionals it can also be challenging to provide the very best care for these patients. It’s crucial that research answers the questions that these people most want answered, and this project aims to identify what these are.

More information and a copy of the survey are available from the study website and the results will be available on the website in 2019.

Dr Clare Taylor, GP and Academic Clinical Lecturer at the Nuffield Department of Primary Care Health Sciences at the University of Oxford, and co-lead of the project said: “Advanced heart failure causes unpleasant symptoms such as breathlessness, tiredness and swelling which can have a big impact on patients’ quality of life. We want to find out what matters most to those living with the condition to see where research is needed.

Traditionally researchers, and their funders, have decided what research should be carried out but this project will ask those most affected by the condition – patients, their families and the clinical staff looking after them – to make sure the research we do in the future is more relevant to people living with advanced heart failure”.