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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.

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

NIHR-funded 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 is launching a survey on Tuesday 12 June, which invites 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 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”.

More information and a copy of the survey are available from:

https://oxford.onlinesurveys.ac.uk/ahf_psp

The results will be available on the website in 2019.

This work is funded by the NIHR School of Primary Care Research.

 

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