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针对对脊髓刺激感兴趣的慢性疼痛患者,审视基于网络信息的类型、质量和内容:社会倾听研究。

Examining the Type, Quality, and Content of Web-Based Information for People With Chronic Pain Interested in Spinal Cord Stimulation: Social Listening Study.

作者信息

Moens Maarten, Van Doorslaer Leen, Billot Maxime, Eeckman Edgard, Roulaud Manuel, Rigoard Philippe, Fobelets Maaike, Goudman Lisa

机构信息

Department of Neurosurgery, Universitair Ziekenhuis Brussel, Brussels, Belgium.

STIMULUS (reSearch and TeachIng neuroModULation Uz bruSsel) Research Group, Vrije Universiteit Brussel, Brussels, Belgium.

出版信息

J Med Internet Res. 2024 Jan 30;26:e48599. doi: 10.2196/48599.

DOI:10.2196/48599
PMID:38289645
原文链接:https://pmc.ncbi.nlm.nih.gov/articles/PMC10865187/
Abstract

BACKGROUND

The increased availability of web-based medical information has encouraged patients with chronic pain to seek health care information from multiple sources, such as consultation with health care providers combined with web-based information. The type and quality of information that is available on the web is very heterogeneous, in terms of content, reliability, and trustworthiness. To date, no studies have evaluated what information is available about neuromodulation on the web for patients with chronic pain.

OBJECTIVE

This study aims to explore the type, quality, and content of web-based information regarding spinal cord stimulation (SCS) for chronic pain that is freely available and targeted at health care consumers.

METHODS

The social listening tool Awario was used to search Facebook (Meta Platforms, Inc), Twitter (Twitter, Inc), YouTube (Google LLC), Instagram (Meta Platforms, Inc), blogs, and the web for suitable hits with "pain" and "neuromodulation" as keywords. Quality appraisal of the extracted information was performed using the DISCERN instrument. A thematic analysis through inductive coding was conducted.

RESULTS

The initial search identified 2174 entries, of which 630 (28.98%) entries were eventually withheld, which could be categorized as web pages, including news and blogs (114/630, 18.1%); Reddit (Reddit, Inc) posts (32/630, 5.1%); Vimeo (Vimeo, Inc) hits (38/630, 6%); or YouTube (Google LLC) hits (446/630, 70.8%). Most posts originated in the United States (519/630, 82.4%). Regarding the content of information, 66.2% (383/579) of the entries discussed (fully discussed or partially discussed) how SCS works. In total, 55.6% (322/579) of the entries did not elaborate on the fact that there may be >1 potential treatment choice and 47.7% (276/579) did not discuss the influence of SCS on the overall quality of life. The inductive coding revealed 4 main themes. The first theme of pain and the burden of pain (1274/8886, 14.34% coding references) explained about pain, pain management, individual impact of pain, and patient experiences. The second theme included neuromodulation as a treatment approach (3258/8886, 36.66% coding references), incorporating the background on neuromodulation, patient-centered care, SCS therapy, and risks. Third, several device-related aspects (1722/8886, 19.38% coding references) were presented. As a final theme, patient benefits and testimonials of treatment with SCS (2632/8886, 29.62% coding references) were revealed with subthemes regarding patient benefits, eligibility, and testimonials and expectations.

CONCLUSIONS

Health care consumers have access to web-based information about SCS, where details about the surgical procedures, the type of material, working mechanisms, risks, patient expectations, testimonials, and the potential benefits of this therapy are discussed. The reliability, trustworthiness, and correctness of web-based sources should be carefully considered before automatically relying on the content.

摘要

背景

基于网络的医学信息日益丰富,这促使慢性疼痛患者从多个来源寻求医疗保健信息,比如与医疗保健提供者咨询并结合网络信息。网络上可获取的信息在内容、可靠性和可信度方面非常参差不齐。迄今为止,尚无研究评估网络上为慢性疼痛患者提供了哪些关于神经调节的信息。

目的

本研究旨在探索针对医疗保健消费者免费提供的、关于脊髓刺激(SCS)治疗慢性疼痛的网络信息的类型、质量和内容。

方法

使用社交倾听工具Awario在脸书(Meta平台公司)、推特(推特公司)、优兔(谷歌有限责任公司)、照片墙(Meta平台公司)、博客和网络上搜索以“疼痛”和“神经调节”为关键词的合适信息。使用DISCERN工具对提取的信息进行质量评估。通过归纳编码进行主题分析。

结果

初步搜索识别出2174条记录,其中630条(28.98%)记录最终被排除,这些记录可归类为网页,包括新闻和博客(114/630,18.1%);红迪网(红迪公司)帖子(32/630,5.1%);维密欧网(维密欧公司)信息(38/630,6%);或优兔(谷歌有限责任公司)信息(446/630,70.8%)。大多数帖子源自美国(519/630,82.4%)。关于信息内容,66.2%(383/579)的记录讨论了(全面讨论或部分讨论)SCS的工作原理。总共55.6%(322/579)的记录未详细说明可能存在不止一种潜在治疗选择这一事实,47.7%(276/579)的记录未讨论SCS对整体生活质量的影响。归纳编码揭示了4个主要主题。第一个主题是疼痛与疼痛负担(1274/8886,14.34%编码参考),解释了疼痛、疼痛管理、疼痛对个体的影响以及患者经历。第二个主题包括神经调节作为一种治疗方法(3258/8886,36.66%编码参考),涵盖神经调节的背景、以患者为中心的护理、SCS治疗以及风险。第三,呈现了几个与设备相关的方面(1722/8886,19.38%编码参考)。作为最后一个主题,揭示了患者受益以及SCS治疗的推荐(2632/8886,29.62%编码参考),其包含关于患者受益、适用性以及推荐和期望的子主题。

结论

医疗保健消费者可以获取关于SCS的网络信息,其中讨论了手术程序细节、材料类型、工作机制、风险、患者期望、推荐以及这种治疗的潜在益处。在自动依赖这些内容之前,应仔细考虑网络来源的可靠性、可信度和正确性。

https://cdn.ncbi.nlm.nih.gov/pmc/blobs/6abe/10865187/551862caa598/jmir_v26i1e48599_fig3.jpg
https://cdn.ncbi.nlm.nih.gov/pmc/blobs/6abe/10865187/fb4967432496/jmir_v26i1e48599_fig1.jpg
https://cdn.ncbi.nlm.nih.gov/pmc/blobs/6abe/10865187/551862caa598/jmir_v26i1e48599_fig3.jpg
https://cdn.ncbi.nlm.nih.gov/pmc/blobs/6abe/10865187/fb4967432496/jmir_v26i1e48599_fig1.jpg
https://cdn.ncbi.nlm.nih.gov/pmc/blobs/6abe/10865187/551862caa598/jmir_v26i1e48599_fig3.jpg

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