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慢性眼痛患者的经历与见解:社交媒体倾听研究

Patient Experiences and Insights on Chronic Ocular Pain: Social Media Listening Study.

作者信息

Sloesen Brigitte, O'Brien Paul, Verma Himanshu, Asaithambi Sathyaraj, Parashar Nikita, Mothe Raj Kumar, Shaikh Javed, Syntosi Annie

机构信息

Novartis Pharma NV, Vilvoorde, Belgium.

Novartis Ireland Limited, Dublin, Ireland.

出版信息

JMIR Form Res. 2024 Feb 15;8:e47245. doi: 10.2196/47245.

Abstract

BACKGROUND

Ocular pain has multifactorial etiologies that affect activities of daily life, psychological well-being, and health-related quality of life (QoL). Chronic ocular surface pain (COSP) is a persistent eye pain symptom lasting for a period longer than 3 months.

OBJECTIVE

The objective of this social media listening study was to better understand COSP and related symptoms and identify its perceived causes, comorbidities, and impact on QoL from social media posts.

METHODS

A search from February 2020 to February 2021 was performed on social media platforms (Twitter, Facebook, blogs, and forums) for English-language content posted on the web. Social media platforms that did not provide public access to information or posts were excluded. Social media posts from Australia, Canada, the United Kingdom, and the United States were retrieved using the Social Studio platform-a web-based aggregator tool.

RESULTS

Of the 25,590 posts identified initially, 464 posts about COSP were considered relevant; the majority of conversations (98.3%, n=456) were posted by adults (aged >18 years). Work status was mentioned in 52 conversations. Patients' or caregivers' discussions across social media platforms were centered around the symptoms (61.9%, n=287) and causes (58%, n=269) of ocular pain. Patients mentioned having symptoms associated with COSP, including headache or head pressure, dry or gritty eyes, light sensitivity, etc. Patients posted that their COSP impacts day-to-day activities such as reading, driving, sleeping, and their social, mental, and functional well-being.

CONCLUSIONS

Insights from this study reported patients' experiences, concerns, and the adverse impact on overall QoL. COSP imposes a significant burden on patients, which spans multiple aspects of daily life.

摘要

背景

眼痛有多种病因,会影响日常生活活动、心理健康以及与健康相关的生活质量(QoL)。慢性眼表疼痛(COSP)是一种持续的眼痛症状,持续时间超过3个月。

目的

这项社交媒体倾听研究的目的是从社交媒体帖子中更好地了解COSP及其相关症状,并确定其感知到的病因、合并症以及对生活质量的影响。

方法

于2020年2月至2021年2月在社交媒体平台(推特、脸书、博客和论坛)上搜索发布在网络上的英文内容。未提供信息或帖子公开访问权限的社交媒体平台被排除。使用Social Studio平台(一种基于网络的聚合工具)检索来自澳大利亚、加拿大、英国和美国的社交媒体帖子。

结果

在最初识别出的25590条帖子中,464条关于COSP的帖子被认为相关;大多数讨论(98.3%,n = 456)由成年人(年龄>18岁)发布。52条对话中提到了工作状态。患者或护理人员在社交媒体平台上的讨论集中在眼痛的症状(61.9%,n = 287)和病因(58%,n = 269)上。患者提到有与COSP相关的症状,包括头痛或头部压迫感、眼睛干涩或有沙粒感、畏光等。患者发布称他们的COSP会影响日常活动,如阅读、驾驶、睡眠以及他们的社交、心理和功能健康。

结论

本研究的见解报告了患者的经历、担忧以及对整体生活质量的不利影响。COSP给患者带来了重大负担,涵盖日常生活的多个方面。

https://cdn.ncbi.nlm.nih.gov/pmc/blobs/788d/10905354/759a836bcb9d/formative_v8i1e47245_fig1.jpg

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