脑部疾病患者参与经验的系统回顾。

IF 1.8 Q3 HEALTH CARE SCIENCES & SERVICES
Deborah Bertorello, Giampaolo Brichetto, Frans Folkvord, Alexandra Theben, Paola Zaratin
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引用次数: 0

摘要

背景:患者参与越来越被认为是脑部疾病治疗的一个重要因素,以优化患者、社会和医疗保健系统的结果。然而,检验脑病患者参与研究与创新(R&I)的方法的科学研究很少。目的:回顾现有的关于大脑疾病患者参与研究和创新的科学证据。方法:根据预先设定的选择标准,从多个文献数据库(出版日期为2016年1月至2019年4月)中检索研究。结果:共有49篇文章符合纳入标准,并进行了系统的审查。结果表明,关于患者参与(大脑)研究和创新的影响和(成本)效益的证据有限。大多数已发表的研究都是关于患者参与健康研究和创新的协议、指南和讨论文章。总的来说,有一个普遍的共识是让患者参与研究过程的每一步。确定的相关证据包括参与原则、利益相关方类型的定义、规划、开展和传播参与研究的关键考虑因素、潜在的参与活动以及有前景的实践实例。讨论:由于方法上的差异,结果是不确定的。由于患者、参与形式和患者参与总持续时间的差异,研究之间的比较很困难。患者参与的经验主要涉及坚持治疗或“专家患者”参与临床试验,但很少涉及根据负责任的研究与创新(RRI)的要求管理R&I。为了能够就如何提高患者对研究和创新的有效参与以及评估其影响和(成本)效益提出基于证据的建议,需要更多结构化、管理良好且具有可比性的随机对照试验(RCTs)。
本文章由计算机程序翻译,如有差异,请以英文原文为准。

A Systematic Review of Patient Engagement Experiences in Brain Disorders.

A Systematic Review of Patient Engagement Experiences in Brain Disorders.

Background: Patient engagement is increasingly considered to be an important element in the treatment of brain disorders to optimise outcomes for patients, society, and healthcare systems. Nonetheless, scientific research examining methodologies to engage patients with brain diseases in Research and Innovation (R&I) is scarce.

Aim: To review existing scientific evidence regarding the engagement of patients with brain disorders in research and innovation.

Methods: Studies were retrieved from several bibliographic databases (publication date between January 2016 and April 2019) with pre-specified selection criteria.

Results: In total, 49 articles were identified as meeting the inclusion criteria and were reviewed systematically. Results showed that there is limited evidence available on the impact and (cost-) effectiveness of patient engagement in (brain) research and innovation. Most published studies are protocols, guidelines, and discussion articles for patient engagement in health research and innovation. Overall, there exists a general consensus to engage patients in every step of the research procedure. Relevant evidence identified includes principles of engagement, definitions of stakeholder types, key considerations for planning, conducting and disseminating engaged research, potential engagement activities, and examples of promising practices.

Discussion: Findings are inconclusive due to methodological differences. Comparison between studies was difficult due to differences in patients, form of engagements, and total duration of engagement of patients. Experiences of patient engagement mainly concern adherence to medical treatments or participation of "expert patients" in clinical trials, but very rarely the governance of R&I according to the dictates of Responsible Research and Innovation (RRI). More structuralized, well-conducted and comparable Randomized Controlled Trials (RCTs) are needed to be able to make evidence-based recommendations on how to increase effective patient engagement in research and innovation and assess the impact and (cost)-effectiveness.

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来源期刊
Patient Related Outcome Measures
Patient Related Outcome Measures HEALTH CARE SCIENCES & SERVICES-
自引率
4.80%
发文量
27
审稿时长
16 weeks
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