Uncertainty in serious illness: A national interdisciplinary consensus exercise to identify clinical research priorities

Abstract

AbstractBackgroundSerious illness is characterised by uncertainty, particularly in older age groups. Uncertainty may be experienced by patients, family carers, and health professionals about a broad variety of issues. There are many evidence gaps regarding the experience and management of uncertainty.AimWe aimed to identify priority research areas concerning uncertainty in serious illness, to ensure that future research better meets the needs of those affected by uncertainty and reduce research inefficiencies.MethodsRapid prioritisation workshop comprising five focus groups to identify research areas, followed by a ranking exercise to prioritise them. Participants were healthcare professionals caring for those with serious illnesses including geriatrics, palliative care, intensive care; researchers; patient/carer representatives, and policymakers. Descriptive analysis of ranking data and qualitative framework analysis of focus group transcripts was undertaken.ResultsThirty-four participants took part; 67% female, mean age 47 (range 33 – 67). The highest priority was communication of uncertainty, ranked first by 15 participants (overall ranking score 1.59/3). Subsequent priorities were: 2) How to cope with uncertainty; 3) healthcare professional education/training; 4) Optimising clinical approaches to uncertainty; and 5) exploring in-depth experiences of uncertainty. Research related to optimally managing uncertainty was given higher priority than research focusing on experiences of uncertainty and its impact.ConclusionsThese co-produced, clinically-focused research priorities map out key evidence gaps concerning uncertainty in serious illness. Managing uncertainty is the most pressing issue, and researchers should prioritise how to optimally manage uncertainty in order to reduce distress, unlock decision paralysis and improve illness and care experience.Key pointsUncertainty is ubiquitous and distressing in serious illness, and can paralyse decision makingIn this consensus exercise, stakeholders identified research priorities for uncertainty in serious illnessCommunication of uncertainty was the highest priorityParticipants prioritised research concerning managing uncertainty above research to understand experiences of uncertainty