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关于多发性硬化症早期干预的偏好和态度:一项系统的文献综述。

Preferences and attitudes regarding early intervention in multiple sclerosis: A systematic literature review.

作者信息

Martin Sylvia, Kihlbom Ulrik, Pasquini Guido, Gerli Filippo, Niccolai Claudia, Della Bella Sara, Portaccio Emilio, Betti Matteo, Amato Maria Pia, Achiron Anat, Kalron Alon, Aloni Roy, Schölin Bywall Karin

机构信息

Uppsala University, Center for research and bioethics, Uppsala, Sweden.

Uppsala University, Center for research and bioethics, Uppsala, Sweden; Karolinska institutet, Stokholm, Sweden.

出版信息

Mult Scler Relat Disord. 2024 Dec;92:106143. doi: 10.1016/j.msard.2024.106143. Epub 2024 Oct 28.

Abstract

BACKGROUND

Multiple sclerosis (MS) is a chronic inflammatory disorder affecting the brain and spinal cord, characterized by immune-mediated myelin damage. Early intervention and detection programs have emerged as promising strategies to improve patient outcomes by identifying and treating MS in its earliest stages.

OBJECTIVE

This systematic literature review aims to provide an overview of the preferences, attitudes, and opinions of both patients and healthcare professionals regarding early intervention or early detection programs for MS.

METHODS

A comprehensive search strategy was employed in March 2023 across multiple databases (MEDLINE, Scopus, PsyInfo, PubMed), from 1990 to 2023. A total of 38 articles were selected for analysis based on predefined inclusion and exclusion criteria.

RESULTS

The majority of articles were published in recent years and represented different methods from case reports to randomized controlled trials, with fewer systematic literature reviews. Data collection approaches included patients, healthcare workers, or mixed samples with varying age ranges and gender ratios, frequently preferring women. These samples represented different preference study methods. The included studies were primarily conducted in the USA and the UK. Thematic analysis revealed several key themes : 1) differences emerged between healthcare professionals' and patients' perspectives 2) interventions for MS outside Disease-Modifying Therapies (DMTs) 3) severe side effects 4) communication, information, and knowledge 5) psychological and emotional aspects.

CONCLUSIONS

Understanding these diverse factors and subgroups within the MS population can inform more effective, personalized approaches to MS prevention and treatment.

摘要

背景

多发性硬化症(MS)是一种影响大脑和脊髓的慢性炎症性疾病,其特征是免疫介导的髓鞘损伤。早期干预和检测项目已成为通过在MS的最早阶段进行识别和治疗来改善患者预后的有前景的策略。

目的

本系统文献综述旨在概述患者和医疗保健专业人员对MS早期干预或早期检测项目的偏好、态度和意见。

方法

2023年3月在多个数据库(MEDLINE、Scopus、PsyInfo、PubMed)中采用全面检索策略,检索时间范围为1990年至2023年。根据预先定义的纳入和排除标准,共选择38篇文章进行分析。

结果

大多数文章是近年来发表的,代表了从病例报告到随机对照试验的不同方法,系统文献综述较少。数据收集方法包括患者、医护人员或不同年龄范围和性别比例的混合样本,女性通常更受青睐。这些样本代表了不同的偏好研究方法。纳入的研究主要在美国和英国进行。主题分析揭示了几个关键主题:1)医护人员和患者观点之间存在差异;2)疾病修饰疗法(DMTs)之外的MS干预措施;3)严重副作用;4)沟通、信息和知识;5)心理和情感方面。

结论

了解MS人群中的这些不同因素和亚组可以为更有效、个性化的MS预防和治疗方法提供信息。

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