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Perspectives from the Patient and the Healthcare Professional in Multiple Sclerosis: Social Media and Patient Education

机译:患者和医护人员在多发性硬化中的观点:社交媒体和患者教育

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摘要

A diagnosis of multiple sclerosis (MS) is life-altering. Because the course of MS is heterogeneous, patients may face uncertainty in terms of long-term physical and cognitive challenges, potential loss of employment, and the risk of social isolation. Patients often turn to the Internet and social media for information about MS and its management, and to seek out fellow patients and support groups. Here, we examine the use of social media and the Internet among patients with MS, considering its impact on patient education. We consider the access that these conduits provide not only to other patients with MS but also to a wealth of disease-related information online. These themes are further illustrated with first-hand experiences of the patient author and her physician. We also explore the impact of the Internet and social media on the education and support of patients with MS from the healthcare professional’s (HCP’s) perspective, including opportunities for HCPs to promote disease education among their patients, and the advantages that arise from patients being better informed about their disease. The rise of the Internet and social media has changed the patient experience, helping patients to support each other, to educate themselves proactively about their condition, and to participate more actively in decisions relating to disease management than perhaps was the case historically. >Funding Novartis Pharmaceuticals Corporation.
机译:多发性硬化症(MS)的诊断会改变生活。由于MS的病程是异质的,因此患者可能会面临长期的身体和认知挑战,可能失去工作以及社交孤立的风险。患者通常会通过Internet和社交媒体获取有关MS及其管理的信息,并寻找其他患者和支持小组。在这里,我们考虑了MS对患者教育的影响,研究了社交媒体和Internet在MS患者中的使用。我们认为这些导管不仅可以为其他MS患者提供访问,而且还可以在线获取大量与疾病相关的信息。通过患者作者和她的医生的第一手经验进一步说明了这些主题。我们还将从医疗保健专业人员(HCP)的角度探讨互联网和社交媒体对MS患者的教育和支持的影响,包括HCP在患者中促进疾病教育的机会,以及患者变得更好所带来的好处。了解他们的疾病。互联网和社交媒体的兴起改变了患者的体验,帮助患者相互支持,主动地对自己的病情进行教育,并比以往可能更积极地参与有关疾病管理的决策。 >资金:诺华制药公司。

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