三方知识翻译计划:创新的以患者为中心的方法参与临床研究与多发性硬化症的个人。

IF 2.2 Q3 CLINICAL NEUROLOGY Multiple Sclerosis International Pub Date : 2021-07-16 eCollection Date: 2021-01-01 DOI:10.1155/2021/5531693
Aman Saini, Colleen Cochran, Audrey Zucker-Levin, Sarah J Donkers, Pawan Kumar, Katherine B Knox, Jessica MacPherson, Hannah Salapa, Michael C Levin
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引用次数: 0

摘要

背景:代表个人观点的知识翻译模型是有效知识翻译的标志。KT中的一些常见挑战包括参与者的参与、团队的组织和参与者的时间需求。我们实施了一个独特的三方KT计划,以(1)分享当前的研究,(2)告知多发性硬化症(pwMS)患者临床研究过程,(3)邀请pwMS患者立即参与临床研究。主要目的是确定参与者对在患者和家庭教育会议上提供的体验式研究项目的价值和可接受性的看法。方法:一组研究人员确定了影响在会议上主持体验式研究计划的后勤因素,并设计了一个独特的三方KT计划。当地多发性硬化症(MS)协会被委托选择一个合适的地点并邀请利益相关者参加会议。一项调查,以确定参与者的观点对价值和可接受的体验式研究计划进行了开发和分析。结果:65名女大学生参加了会议,44名(67.7%)参加了现场体验研究项目。72.7%的参与者完成了调查,其中93.8%的人表示他们非常同意或同意以下陈述:“你觉得今天参加研究对你来说是一次宝贵的经历吗?”和“你觉得你对MS研究有贡献吗?”当被问及“你希望在这类活动中看到更多的研究活动吗?”时,100%的参与者同意或非常同意。结论:本文描述了开展体验式KT计划的后勤和挑战,该计划被证明对pwMS是有益的。参加会议的大多数pwMS同意参加现场体验式研究项目,绝大多数与会者认为这种体验是有价值的。
本文章由计算机程序翻译,如有差异,请以英文原文为准。

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A Tripartite Knowledge Translation Program: Innovative Patient-Centered Approach to Clinical Research Participation for Individuals with Multiple Sclerosis.

Background: Knowledge translation (KT) models that represent an individual's perspective are a sign of effective KT. Some common challenges in KT include participant engagement, organization of the team, and time demands of the participants. We implemented a unique tripartite KT program to (1) share current research, (2) inform persons living with multiple sclerosis (pwMS) about the clinical research process, and (3) invite pwMS to immediately participate in clinical research. The primary aim was to determine participants' perspectives on the value and acceptability of an experiential research program offered at a patient and family educational conference.

Methods: A team of researchers identified factors that would impact the logistics of hosting an experiential research program at a conference and designed a unique tripartite KT program. The local multiple sclerosis (MS) society was engaged to select an appropriate location and invite stakeholders to the conference. A survey to determine participants' perspectives on the value and acceptability of the experiential research program was developed and analyzed.

Results: 65 pwMS attended the conference, and 44 (67.7%) participated in the on-site experiential research program. 72.7% of the participants completed the survey, of which 93.8% stated that they strongly agree or agree with the following statements: "Did you feel like participating in research today was a valuable experience to you?" and "Did you feel like you were contributing to MS research?" 100% of the participants agreed or strongly agreed when asked "would you like to see more research activities taking place at these kinds of events?"

Conclusions: This paper describes the logistics and challenges of conducting an experiential KT program, which proved to be rewarding for pwMS. The majority of pwMS attending the conference agreed to participate in the on-site experiential research program and an overwhelming majority of participants felt the experience was valuable.

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来源期刊
Multiple Sclerosis International
Multiple Sclerosis International CLINICAL NEUROLOGY-
自引率
0.00%
发文量
6
审稿时长
15 weeks
期刊介绍: Multiple Sclerosis International is a peer-reviewed, Open Access journal that publishes original research articles, review articles, and clinical studies related to all aspects of multiple sclerosis, including clinical neurology, neuroimaging, neuropathology, therapeutics, genetics, neuroimmunology, biomarkers, psychology and neurorehabilitation.
期刊最新文献
White Matter Lesion Volumes on 3-T MRI in People With MS Who Had Followed a Diet and Lifestyle Program for More Than 10 Years. Pulp Sensitivity Testing in Multiple Sclerosis: Disease Duration and Sensory/Motor Associations-A Cross-Sectional Study. Brain Atrophy as an Outcome of Disease-Modifying Therapy for Remitting-Relapsing Multiple Sclerosis. Cognitive Contributors of Backward Walking in Persons with Multiple Sclerosis. Patient and Clinician Perspectives of Physical Therapy for Walking Difficulties in Multiple Sclerosis.
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