评估 EULAR 工作组中初级成员以及患者和医疗保健专业人员代表的参与情况:一项国际调查的结果。

IF 5.1 2区 医学 Q1 RHEUMATOLOGY RMD Open Pub Date : 2024-06-12 DOI:10.1136/rmdopen-2024-004177
Pierre-Antoine Juge, Tue Wenzel Kragstrup, Luis Fernando Perez-Garcia, Elsa Frãzao-Mateus, Souzi Makri, Peter Boyd, Jette Primdahl, Ricardo J O Ferreira, Theodora P M Vliet Vlieland, Mwidimi Ndosi, Uta Kiltz, Robert Landewé, Kim Lauper, Manouk de Hooge
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引用次数: 0

摘要

目的:欧洲风湿病学协会联盟(EULAR)工作组(TF)要求≥2名初级成员、1名风湿病学健康专业人员(HPR)和2名患者研究伙伴参与制定建议或考虑要点。在本研究中,将这些初级成员和代表成员的参与情况与传统 TF 成员(召集人、方法论专家、研究员和专家 TF 成员)的参与情况进行了比较:方法:我们制作了一份在线调查问卷,并通过电子邮件发送给 EULAR TF 的前任成员。调查包括多项选择、开放式和0-100分评分(完全不同意到完全同意)等问题:共有77人回复,其中48人(62%)为女性。共有 46 人(60%)曾作为初级或有代表性的 TF 成员参与调查。大多数初级/代表成员表示,他们对第一次参加专题工作队感到毫无准备(10/14,71%)。与传统成员相比,初级成员/代表成员对自己在 TF 中角色的不确定性明显更高(中位数为 23(IQR 7.0-52.0) vs 7(IQR 0.0-21.0)),初级成员/代表成员感觉召集人的参与度较低(54% vs 71%)。促进工作组内互动的主要因素是经验、专业知识和准备(54%)、支持性氛围(42%)和明确的角色(12%):结论:青少年、患者和HPR在参加EULAR TF时会遇到各种挑战。这些挑战不同于传统的TF成员所经历的挑战,通常也不那么明显。召集人应向参与者介绍各项任务,强调其贡献的价值以及如何为 TF 会议做好相应准备。
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Evaluating the participation of junior members and patient and healthcare professionals representatives in EULAR task forces: results from an international survey.

Objective: European Alliance of Associations for Rheumatology (EULAR) task forces (TF) requires participation of ≥2 junior members, a health professional in rheumatology (HPR) and two patient research partners for the development of recommendations or points to consider. In this study, participation of these junior and representative members was compared with the one of traditional TF members (convenor, methodologist, fellow and expert TF members).

Methods: An online survey was developed and emailed to previous EULAR TF members. The survey comprised multiple-choice, open-ended and 0-100 rating scale (fully disagree to fully agree) questions.

Results: In total, 77 responded, 48 (62%) women. In total, 46 (60%) had participated as a junior or representative TF member. Most junior/representative members reported they felt unprepared for their first TF (10/14, 71%). Compared with traditional members, junior/representative members expressed a significantly higher level of uncertainty about their roles within the TF (median score 23 (IQR 7.0-52.0) vs 7 (IQR 0.0-21.0)), and junior/representative members felt less engaged by the convenor (54% vs 71%). Primary factors that facilitated interaction within a TF were experience, expertise and preparation (54%), a supportive atmosphere (42%) and a clear role (12%).

Conclusion: Juniors, patients and HPR experience various challenges when participating in a EULAR TF. These challenges differ from and are generally less pronounced than those experienced by traditional TF members. The convenor should introduce the participants to the tasks, emphasise the value of their contributions and how to prepare accordingly for the TF meeting.

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来源期刊
RMD Open
RMD Open RHEUMATOLOGY-
CiteScore
7.30
自引率
6.50%
发文量
205
审稿时长
14 weeks
期刊介绍: RMD Open publishes high quality peer-reviewed original research covering the full spectrum of musculoskeletal disorders, rheumatism and connective tissue diseases, including osteoporosis, spine and rehabilitation. Clinical and epidemiological research, basic and translational medicine, interesting clinical cases, and smaller studies that add to the literature are all considered.
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