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莱姆病和医疗漫游:患者如何看待多学科管理?科学和社会争议背景下的定性研究。

Lyme borreliosis and medical wandering: what do patients think about multidisciplinary management? A qualitative study in the context of scientific and social controversy.

机构信息

Department of Infectious Diseases, Tick-Borne Diseases Reference Center of Paris and the Northern Region, Centre Hospitalier Intercommunal de Villeneuve-Saint-Georges, 40 Allée de La Source, 94190, Villeneuve-Saint-Georges, France.

EpiMAI Research Unity, Laboratory of Animal Health, Anses-National Veterinary School of Alfort, 7 Av. du Général de Gaulle, 94700, Maisons-Alfort, France.

出版信息

BMC Infect Dis. 2024 Mar 22;24(1):344. doi: 10.1186/s12879-024-09194-3.

DOI:10.1186/s12879-024-09194-3
PMID:38519907
原文链接:https://pmc.ncbi.nlm.nih.gov/articles/PMC10958838/
Abstract

INTRODUCTION

To answer to patients' medical wandering, often due to "unexplained symptoms" of "unexplained diseases" and to misinformation, multidisciplinary care centers for suspected Lyme borreliosis (LB), such as the 5 Tick-Borne Diseases (TBDs) Reference Centers (TBD-RC), were created a few years ago in France, the Netherlands and Denmark. Our study consisted of a comprehensive analysis of the satisfaction of the patients managed at a TBD-RC for suspected LB in the context of scientific and social controversy.

METHODS

We included all adults who were admitted to one of the TBD-RC from 2017 to 2020. A telephone satisfaction survey was conducted 12 months after their first consultation. It consisted of 5 domains, including 2 free-text items: "What points did you enjoy?" and "What would you like us to change or to improve?". In the current study, the 2 free-items were analyzed with a qualitative method called reflexive thematic analysis within a semantic and latent approach.

RESULTS

The answer rate was 61.3% (349/569) and 97 distinctive codes from the 2-free-text items were identified and classified into five themes: (1) multidisciplinarity makes it possible to set up quality time dedicated to patients; (2) multidisciplinarity enables seamless carepaths despite the public hospital crisis compounded by the COVID-19 pandemic; (3) multidisciplinarity is defined as trust in the team's competences; (4) an ambivalent opinion and uncertainty are barriers to acceptance of the diagnosis, reflecting the strong influence of the controversy around LB; and (5) a lack of adapted communication about TBDs, their management, and ongoing research is present.

CONCLUSION

The multidisciplinary management for suspected LB seemed an answer to medical wandering for the majority of patients and helped avoid misinformation, enabling better patient-centered shared information and satisfaction, despite the context of controversy.

摘要

简介

为了回应患者因“不明原因疾病”的“不明原因症状”而产生的医学漫游,几年前在法国、荷兰和丹麦创建了多学科的莱姆病疑似患者护理中心(如 5 个蜱传疾病(TBDs)参考中心(TBD-RC))。我们的研究包括对在科学和社会争议背景下在 TBD-RC 接受疑似莱姆病管理的患者满意度进行全面分析。

方法

我们纳入了所有 2017 年至 2020 年期间在 TBD-RC 就诊的成年人。在首次就诊后 12 个月进行了电话满意度调查。它包括 5 个领域,包括 2 个自由文本项:“您喜欢哪些方面?”和“您希望我们改变或改进什么?”。在本研究中,使用一种称为语义和潜在方法的反思性主题分析的定性方法对这 2 个自由项进行了分析。

结果

应答率为 61.3%(349/569),从 2 个自由文本项中识别出 97 个独特代码,并分为五个主题:(1)多学科性使为患者设置专用高质量时间成为可能;(2)多学科性使无缝护理路径成为可能,尽管公共卫生危机因 COVID-19 大流行而加剧;(3)多学科性被定义为对团队能力的信任;(4)对诊断的矛盾意见和不确定性是接受诊断的障碍,反映了围绕 LB 的强烈争议的影响;(5)对 TBDs、其管理和正在进行的研究的适应性沟通不足。

结论

多学科管理疑似 LB 似乎是大多数患者医学漫游的答案,并有助于避免错误信息,从而更好地实现以患者为中心的共享信息和满意度,尽管存在争议。

https://cdn.ncbi.nlm.nih.gov/pmc/blobs/ce12/10958838/f24ddff3d140/12879_2024_9194_Fig3_HTML.jpg
https://cdn.ncbi.nlm.nih.gov/pmc/blobs/ce12/10958838/91f3bdaca7e7/12879_2024_9194_Fig1_HTML.jpg
https://cdn.ncbi.nlm.nih.gov/pmc/blobs/ce12/10958838/f90e1e05aee8/12879_2024_9194_Fig2_HTML.jpg
https://cdn.ncbi.nlm.nih.gov/pmc/blobs/ce12/10958838/f24ddff3d140/12879_2024_9194_Fig3_HTML.jpg
https://cdn.ncbi.nlm.nih.gov/pmc/blobs/ce12/10958838/91f3bdaca7e7/12879_2024_9194_Fig1_HTML.jpg
https://cdn.ncbi.nlm.nih.gov/pmc/blobs/ce12/10958838/f90e1e05aee8/12879_2024_9194_Fig2_HTML.jpg
https://cdn.ncbi.nlm.nih.gov/pmc/blobs/ce12/10958838/f24ddff3d140/12879_2024_9194_Fig3_HTML.jpg

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本文引用的文献

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Toward good practice in thematic analysis: Avoiding common problems and be(com)ing a researcher.迈向主题分析的良好实践:避免常见问题并成为一名研究者。
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Multidisciplinary Management of Suspected Lyme Borreliosis: Clinical Features of 569 Patients, and Factors Associated with Recovery at 3 and 12 Months, a Prospective Cohort Study.
疑似莱姆病的多学科管理:569例患者的临床特征以及与3个月和12个月恢复相关的因素,一项前瞻性队列研究
Microorganisms. 2022 Mar 12;10(3):607. doi: 10.3390/microorganisms10030607.
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More than ticking boxes: Training Lyme disease education ambassadors to meet outreach and surveillance challenges in Québec, Canada.超越勾选框:培训莱姆病教育大使以应对加拿大魁北克省的外展和监测挑战。
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Methodological Quality Assessment with the AGREE II Scale and a Comparison of European and American Guidelines for the Treatment of Lyme Borreliosis: A Systematic Review.使用AGREE II量表进行方法学质量评估以及欧美莱姆病治疗指南比较:一项系统评价
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