Multiple Sclerosis Clinical Trials Unit, Nuffield Department of Clinical Neurosciences, University of Oxford, Oxford, UK; Faculdade de Medicina, Universidade de Lisboa, Lisboa, Portugal; Universidade Católica Portuguesa, Portugal; Serviço de Imagiologia Neurológica, Centro Hospitalar Universitário Lisboa Norte, Lisboa, Portugal.
Multiple Sclerosis Clinical Trials Unit, Nuffield Department of Clinical Neurosciences, University of Oxford, Oxford, UK; Faculdade de Medicina, Universidade de Lisboa, Lisboa, Portugal; Serviço de Neurologia, Departamento de Neurociências e Saúde Mental, Hospital Santa Maria, Centro Hospitalar Universitário Lisboa Norte, Lisboa, Portugal.
Mult Scler Relat Disord. 2023 Nov;79:105032. doi: 10.1016/j.msard.2023.105032. Epub 2023 Sep 29.
People with Multiple Sclerosis (pwMS) search for information online about various aspects of living with their disease, but details about patterns of searching and outcomes are unclear. This means that opportunities to leverage online resources to support pwMS, and to enhance shared decision making, may be missed. We aimed to do a systematic review of the literature on digital information searching by pwMS.
We performed a systematic search for studies assessing online information seeking of pwMS in MEDLINE and JSTOR databases. Studies were screened and selected by two investigators. All study designs were included, risk of bias was assessed using the Critical Appraisal Skills Programme qualitative checklist. Reports were assessed for the proportion of patients searching information online about MS, type of information sought, online tools used by patients, perceived quality of the information acquired, and impact of online searching in pwMS.
We identified 5 studies, including 10,090 patients. Most pwMS search for information online (53.8-82 %), which they rarely discuss with physicians. The most common topics are treatment, general disease information, symptoms, lifestyle recommendations, prognosis, and coping strategies. Patients that are younger, have a shorter disease duration, primary progressive MS, and during periods of disease worsening, are more likely to use online resources. Online information is perceived as low quality by pwMS.
Online information search is prevalent among pwMS. Despite concerns with the quality of the available information, only a minority of pwMS will discuss the information found with their physician. These findings highlight the importance of developing and providing quality online information resources for pwMS.
多发性硬化症患者（pwMS）会在网上搜索与疾病相关的各种信息，但关于搜索模式和结果的详细信息尚不清楚。这意味着可能会错失利用在线资源为 pwMS 提供支持和增强共同决策的机会。我们旨在对 pwMS 在线信息搜索的文献进行系统综述。
我们在 MEDLINE 和 JSTOR 数据库中进行了系统性检索，以评估评估 pwMS 在线信息搜索的研究。由两名研究人员筛选和选择研究。纳入所有研究设计，使用批判性评估技能计划定性清单评估偏倚风险。报告评估了患者在线搜索多发性硬化症信息的比例、搜索的信息类型、患者使用的在线工具、获得信息的感知质量，以及在线搜索对 pwMS 的影响。
我们确定了 5 项研究，共纳入 10090 名患者。大多数 pwMS 会在线搜索信息（53.8-82%），但很少与医生讨论。最常见的主题是治疗、一般疾病信息、症状、生活方式建议、预后和应对策略。年龄较小、疾病持续时间较短、原发性进展型多发性硬化症和疾病恶化期间的患者更有可能使用在线资源。pwMS 认为在线信息质量较低。
在线信息搜索在 pwMS 中很普遍。尽管存在对可用信息质量的担忧，但只有少数 pwMS 会与医生讨论他们找到的信息。这些发现强调了为 pwMS 开发和提供高质量在线信息资源的重要性。
