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爱尔兰的痴呆症研究:我们应该优先考虑什么?

Dementia research in Ireland: What should we prioritise?

作者信息

Rogan Carol, Rock Bernadette, Begley Emer, Boland Barry, Brazil Kevin, Diaz-Orueta Unai, Donnelly Sarah, Foley Michael, Foley Tony, Hannigan Caoimhe, Hopper Louise, Keogh Fiona, Lawlor Brian, Leroi Iracema, O'Neill Cora, O'Philbin Laura, Pertl Maria, Trépel Dominic, Kennelly Seán

机构信息

School of Medicine, Trinity College Dublin, Dublin, D.2, Ireland.

The Irish Medical Council, Dublin, D.2, Ireland.

出版信息

HRB Open Res. 2023 Nov 2;6:12. doi: 10.12688/hrbopenres.13563.2. eCollection 2023.

Abstract

BACKGROUND

Dementia research prioritisation allows for the systematic allocation of investment in dementia research by governments, funding agencies and the private sector. There is currently a lack of information available in Ireland regarding priority areas for dementia research. To address this gap, a dementia research prioritisation exercise was undertaken, consisting of an online survey of professionals in the dementia field and workshops for people living with dementia and family carers.

METHODS

(1) An anonymous online survey of professionals, based on an existing WHO global survey: the global survey was adapted to an Irish context and participants were asked to score 65 thematic research avenues under five criteria; (2) A mixed-methods exercise for people living with dementia and family carers: this involved two facilitated workshops where participants voted on the research themes they felt were important to them and should be addressed through research.

RESULTS

Eight of the top ten research priorities in the survey of professionals ( =108) were focused on the delivery and quality of care and services for people with dementia and carers. Other research avenues ranked in the top ten focused on themes of timely and accurate diagnosis of dementia in primary health-care practices and diversifying therapeutic approaches in clinical trials. Participants in the workshops ( =13) ranked 'better drugs and treatment for people with dementia', 'dementia prevention/ risk reduction' and 'care for people with dementia and carers' as their top priority areas.

CONCLUSIONS

Findings from this prioritisation exercise will inform and motivate policymakers, funders and researchers to support and conduct dementia-focused research and ensure that the limited resources made available are spent on research that has the most impact for those who will benefit from and use the results of research.

摘要

背景

痴呆症研究优先级确定有助于政府、资助机构和私营部门对痴呆症研究进行系统性投资分配。爱尔兰目前缺乏有关痴呆症研究优先领域的信息。为填补这一空白,开展了一项痴呆症研究优先级确定工作,包括对痴呆症领域专业人员进行在线调查以及为痴呆症患者和家庭护理人员举办研讨会。

方法

(1)基于世界卫生组织现有的全球调查对专业人员进行匿名在线调查:将全球调查改编以适用于爱尔兰情况,并要求参与者根据五个标准对65个主题研究方向进行评分;(2)针对痴呆症患者和家庭护理人员的混合方法活动:这包括两个辅助研讨会,参与者对他们认为对自己重要且应通过研究解决的研究主题进行投票。

结果

专业人员调查(n = 108)中排名前十的研究优先事项中有八项侧重于为痴呆症患者和护理人员提供护理及服务的质量。排名前十的其他研究方向侧重于初级卫生保健实践中痴呆症的及时准确诊断以及临床试验中治疗方法的多样化主题。研讨会参与者(n = 13)将“为痴呆症患者提供更好的药物和治疗”、“痴呆症预防/降低风险”以及“对痴呆症患者和护理人员的护理”列为他们的首要优先领域。

结论

本次优先级确定工作的结果将为政策制定者、资助者和研究人员提供信息并激励他们支持和开展以痴呆症为重点的研究,并确保所提供的有限资源用于对那些将从研究结果中受益并使用研究结果的人产生最大影响的研究。

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