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荷兰采用詹姆斯·林德联盟优先设置伙伴关系方法后,患者、护理人员和医疗保健专业人员提出的医学上无法解释症状的研究重点。

Research priorities for medically not yet explained symptoms expressed by patients, carers, and healthcare professionals in the Netherlands following the James Lind Alliance priority setting partnership approach.

机构信息

Department Tranzo, Tilburg University, Tilburg, the Netherlands; Clinical Centre of Excellence for Body Mind and Health, GGz Breburg, Tilburg, the Netherlands.

Clinical Centre of Excellence for Body Mind and Health, GGz Breburg, Tilburg, the Netherlands; Department of Medical and Clinical Psychology, Center of Research on Psychological Disorders and Somatic Diseases, Tilburg University, Tilburg, the Netherlands.

出版信息

J Psychosom Res. 2024 Nov;186:111890. doi: 10.1016/j.jpsychores.2024.111890. Epub 2024 Aug 22.

DOI:10.1016/j.jpsychores.2024.111890
PMID:39208476
Abstract

OBJECTIVE

Experiencing physical symptoms that are medically not yet explained (MNYES) is associated with considerable burden in daily life. Research priorities in this area have been primarily investigator-driven. The present study identifies the top 10 research priorities, incorporating the views of patients, carers and healthcare professionals.

METHODS

This study used the Priority Setting Partnership approach in collaboration with the James Lind Alliance (JLA). The priority setting approach combines survey-based data from patients with a specific disorder/condition and relevant stakeholders (i.e., caregivers and healthcare professionals) with input from group meetings and a final priority setting consensus meeting. There were three consecutive phases: (1) online survey with an open-ended question to collect topics for future scientific research (N = 345 participants); (2) an online survey among stakeholders to prioritise the research questions generated in Phase 1 (N = 400); and (3) a final multi-stakeholder consensus meeting, held over two half-days to determine the final top 10 research priorities for the Netherlands (day 1 N = 25, day 2 N = 24).

RESULTS

Phase 1 resulted in 572 topics, which were reduced to 37 summary research questions. Phase 2 resulted in 18 research priorities, that were ranked and the top 10 priorities were established during the final consensus meeting. The top 10 research priorities included three main themes: optimising efficient diagnosis and treatment, aetiology and prevention, and coping with MNYES.

CONCLUSION

The top 10 priorities provide insight into what is most important for future research into MNYES from the perspective of patients, carers and healthcare professionals.

摘要

目的

经历尚未在医学上得到解释的身体症状(MNYES)与日常生活中的巨大负担有关。该领域的研究重点主要是由研究人员驱动的。本研究确定了前 10 项研究重点,纳入了患者、护理人员和医疗保健专业人员的观点。

方法

本研究采用与詹姆斯林德联盟(JLA)合作的优先事项设定伙伴关系方法。优先事项设定方法结合了患者特定疾病/病症和相关利益相关者(即护理人员和医疗保健专业人员)的基于调查的综合数据,以及来自小组会议和最终优先事项设定共识会议的输入。共有三个连续阶段:(1)在线调查,使用开放式问题收集未来科学研究的主题(N=345 名参与者);(2)利益相关者的在线调查,对第 1 阶段产生的研究问题进行优先排序(N=400);(3)为期两天的最终多利益相关者共识会议,以确定荷兰的最终前 10 项研究重点(第 1 天 N=25,第 2 天 N=24)。

结果

第 1 阶段产生了 572 个主题,这些主题被简化为 37 个总结研究问题。第 2 阶段产生了 18 个研究重点,这些重点在最终共识会议上进行了排名,确定了前 10 个重点。前 10 项重点研究包括三个主题:优化高效诊断和治疗、病因和预防以及应对 MNYES。

结论

从患者、护理人员和医疗保健专业人员的角度来看,前 10 项重点研究为 MNYES 的未来研究提供了重要的见解。

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