Establishing research priorities to improve the management of patients with advanced heart failure in the community
Heart failure is a complex clinical syndrome affecting 1-2% of the adult population. It places a heavy burden on both patients, their carers and services which typically increases in the advanced stages of the illness. Research priorities have traditionally been set by researchers and funders yet involving patients and clinicians in the process can lead to more valid, credible and relevant research findings. The aim of this project was to determine research priorities in advanced heart failure by bringing together patients, carers and healthcare professionals.
The Universities of Oxford, Bristol and Cambridge worked with the James Lind Alliance to establish an ‘Advanced Heart Failure Priority Setting Partnership’. Priority setting was carried out using the James Lind Alliance method between April 2017 and March 2019. An initial survey was used to collect research uncertainties. Existing evidence was checked to determine if uncertainties had previously been answered. Duplicate questions were removed and overlapping questions were merged. A second survey was used to prioritise the research questions to form a shortlist of research priorities. A workshop attended by patients, carers and healthcare professionals was used to consider the final shortlist and agree a ‘Top Ten’ list of priorities using nominal group technique.
The initial survey was open, and publicly accessible, in October and November 2018: 191 people (74 patients, 17 carers, 91 healthcare professionals, 9 others) submitted a total of 476 research uncertainties. From these, 123 summary questions were categorised and checked against existing literature. Categories included ‘Emotions’, ‘Tiredness and fatigue’, ‘Breathlessness and sleeping’, ‘Service provision’ and ‘What does the future hold’. Duplicate questions were merged and those previously answered by research were removed. In total, 65 questions were included in a second survey which was open and publicly accessible for 4 weeks in January 2019: 122 people ranked these questions in order of priority. The priorities identified by patients and carers differed from healthcare professionals. The top 25 unanswered research priorities were then considered at a final workshop attended by 30 patients, carers and healthcare professionals. The final top ten priorities included patient empowerment and self-care, prognosis and end of life care, interface between the NHS and charities, diuretic management and support for carers.
Using the James Lind Alliance method we have collaboratively identified key research areas in advanced heart failure that matter most to patients, their carers and healthcare professionals. Without this approach, many priority areas for heart failure research would have been missed. These priorities can now be used by researchers and funders to direct future research in advanced heart failure.