PDF(Pubmed)
Abstract：
BACKGROUND: Serious 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.
OBJECTIVE: We 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.
METHODS: Rapid 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.
RESULTS: Thirty-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 questions regarding optimal management of uncertainty were given higher priority than questions about experiences of uncertainty and its impact.
CONCLUSIONS: These 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.
OBJECTIVE: We 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.
METHODS: Rapid 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.
RESULTS: Thirty-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 questions regarding optimal management of uncertainty were given higher priority than questions about experiences of uncertainty and its impact.
CONCLUSIONS: These 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.
摘要：
背景：严重疾病的特点是不确定，特别是在老年群体中。患者可能会经历不确定性，家庭照顾者,和卫生专业人员关于各种各样的问题。关于不确定性的经验和管理，有许多证据空白。
目的：我们旨在确定有关严重疾病不确定感的优先研究领域，以确保未来的研究更好地满足那些受不确定性影响的人的需求，并减少研究效率低下。
方法：由五个焦点小组组成的快速优先研讨会，以确定研究领域，然后进行排名练习，以优先考虑它们。参与者是照顾包括老年病在内的严重疾病的医疗保健专业人员，姑息治疗,重症监护；研究人员；患者/护理人员代表，和政策制定者。对排名数据进行描述性分析，并对焦点小组成绩单进行定性框架分析。
结果：34名参与者参加；67%为女性，平均年龄47岁（范围33-67）。最高优先级是不确定性的沟通，15名参与者排名第一(总排名得分为1.59/3)。随后的优先事项是：2）如何应对不确定性；3）医疗保健专业教育/培训；4）优化不确定性的临床方法；5）探索不确定性的深入经验。与不确定性的经验及其影响有关的问题相比，有关不确定性最佳管理的研究问题得到了更高的重视。
结论：这些共同制作的，以临床为重点的研究重点绘制了有关严重疾病不确定性的关键证据差距.管理不确定性是最紧迫的问题，研究人员应该优先考虑如何最佳地管理不确定性，以减少痛苦，解锁决策瘫痪，改善疾病和护理经验。
目的：我们旨在确定有关严重疾病不确定感的优先研究领域，以确保未来的研究更好地满足那些受不确定性影响的人的需求，并减少研究效率低下。
方法：由五个焦点小组组成的快速优先研讨会，以确定研究领域，然后进行排名练习，以优先考虑它们。参与者是照顾包括老年病在内的严重疾病的医疗保健专业人员，姑息治疗,重症监护；研究人员；患者/护理人员代表，和政策制定者。对排名数据进行描述性分析，并对焦点小组成绩单进行定性框架分析。
结果：34名参与者参加；67%为女性，平均年龄47岁（范围33-67）。最高优先级是不确定性的沟通，15名参与者排名第一(总排名得分为1.59/3)。随后的优先事项是：2）如何应对不确定性；3）医疗保健专业教育/培训；4）优化不确定性的临床方法；5）探索不确定性的深入经验。与不确定性的经验及其影响有关的问题相比，有关不确定性最佳管理的研究问题得到了更高的重视。
结论：这些共同制作的，以临床为重点的研究重点绘制了有关严重疾病不确定性的关键证据差距.管理不确定性是最紧迫的问题，研究人员应该优先考虑如何最佳地管理不确定性，以减少痛苦，解锁决策瘫痪，改善疾病和护理经验。
