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Top 10 priorities for advanced heart failure research published

30 June 2020

Patients with advanced heart failure and their carers have collaborated with clinicians and researchers to identify a top 10 list of questions for advanced heart failure research. The project was led by researchers at the University of Bristol’s Centre for Academic Primary Care. Details of the project and the priority questions have been published in the journal Open Heart today [30 June].

Heart failure is a common condition that affects 1-2% of the population in the UK each year and one in six people aged over 85, many of whom are frail and have multiple health conditions. Symptoms include breathlessness, tiredness and leg-swelling.

The right treatment approach is not always clear and guidelines often focus on those receiving treatment in hospital, even though the majority of people with heart failure are cared for at home or in the community.

The top 10 priorities for advanced heart failure research were developed with the support of the James Lind Alliance using their well validated Priority Setting Partnership approach, and involved researchers from Bristol, Oxford, Lancaster, Birmingham and Cambridge.

An initial list of 489 research questions submitted by 192 respondents was reduced to 65, which was further ranked by 128 respondents. The top 10 priorities were then developed at a consensus meeting of stakeholders and included a focus on quality of life, psychological support, the impact on carers, role of the charity sector and managing prognostic uncertainty.

Dr Rachel Johnson, a GP and NIHR Clinical Lecturer in Primary Health Care at the Centre for Academic Primary Care, said: “Research priorities are typically set by funders and researchers but we know that involving patients, their carers and clinicians in priority setting can produce research that is more credible and relevant to patients’ needs.

“We found that patients and carers prioritised different research questions to health care professionals and the resulting set of priorities suggest a different direction and possibly methods from traditional heart failure research.

“Involving patients, carers and clinicians led to a novel set of research questions that might not have been considered otherwise. We hope that the top 10 research priorities will galvanise heart failure researchers and funders to focus on the questions that are most important to these groups.”

The study was funded by the NIHR School for Primary Care Research.

The top 10 priorities

  1. Which treatments have the biggest impact on the quality of life of people with advanced heart failure?
  2. What amount and type of exercise is safe and effective for people with advanced heart failure?
  3. What is the most empowering and effective education and self-management advice for people with advanced heart failure and their carers? (e.g. dealing with fatigue)?
  4. How can the work of heart failure charities be better integrated with NHS services to optimise the care of people with advanced heart failure? 
  5. Which approaches, in addition to standard therapies, are effective in supporting breathlessness in people with advanced heart failure? 
  6. How do we break down barriers for patients with advanced heart failure, carers and health professionals to enable talking about end of life care? 
  7. What are the benefits of asking a person with advanced heart failure ‘what is important to you’?   
  8. What is the most effective way to use diuretics in advanced heart failure, with respect to fluid overload, kidney function, survival and quality of life? 
  9. How can advanced heart failure patients and professionals be helped to communicate about symptoms that are difficult to express such as anxiety and low mood? 
  10. What support would be most effective for carers of people with advanced heart failure? (e.g. support groups)?

Paper: Research priorities in advanced heart failure: James Lind alliance priority setting partnership. Clare J Taylor, Alyson L Huntley, John Burden, Amy Gadoud, Toto Gronlund, Nicholas Robert Jones, Eleanor Wicks, Sara McKelvie, Kit Byatt, Richard Lehman, Anna King, Bev Mumford, Gene Feder, Jonathan Mant, Richard Hobbs and Rachel Johnson. Published in Open Heart. 30 June 2020.

Further information

About the Centre for Academic Primary Care
The Centre for Academic Primary Care (CAPC) at the University of Bristol is a leading centre for primary care research in the UK, one of nine forming the NIHR School for Primary Care Research. It sits within Bristol Medical School, an internationally recognised centre of excellence for population health research and teaching. Follow us on Twitter: @capcbristol.

About the National Institute for Health Research
The National Institute for Health Research (NIHR) is the nation's largest funder of health and care research. The NIHR:

  • funds, supports and delivers high quality research that benefits the NHS, public health and social care
  • engages and involves patients, carers and the public in order to improve the reach, quality and impact of research
  • attracts, trains and supports the best researchers to tackle the complex health and care challenges of the future
  • invests in world-class infrastructure and a skilled delivery workforce to translate discoveries into improved treatments and services
  • partners with other public funders, charities and industry to maximise the value of research to patients and the economy.

The NIHR was established in 2006 to improve the health and wealth of the nation through research, and is funded by the Department of Health and Social Care. In addition to its national role, the NIHR supports applied health research for the direct and primary benefit of people in low- and middle-income countries, using UK aid from the UK government.

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