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本文引用的文献

1
The Role of Oral Contraceptive Pills in Hidradenitis Suppurativa: A Cohort Study.口服避孕药在化脓性汗腺炎中的作用:一项队列研究。
Life (Basel). 2021 Jul 15;11(7):697. doi: 10.3390/life11070697.
2
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J Drugs Dermatol. 2021 Jun 1;20(6):653-658. doi: 10.36849/JDD.2021.5734.
3
Treatment of hidradenitis suppurativa with tetracycline, doxycycline, or lymecycline: a prospective study.四环素、多西环素或米诺环素治疗化脓性汗腺炎:一项前瞻性研究。
Int J Dermatol. 2021 Jul;60(7):785-791. doi: 10.1111/ijd.15459. Epub 2021 Mar 4.
4
The efficacy and tolerability of tetracyclines and clindamycin plus rifampicin for the treatment of hidradenitis suppurativa: Results of a prospective European cohort study.四环素类药物和克林霉素联合利福平治疗化脓性汗腺炎的疗效和耐受性:一项前瞻性欧洲队列研究的结果。
J Am Acad Dermatol. 2021 Aug;85(2):369-378. doi: 10.1016/j.jaad.2020.12.089. Epub 2021 Jan 20.
5
Hidradenitis suppurativa.化脓性汗腺炎。
Nat Rev Dis Primers. 2020 Mar 12;6(1):18. doi: 10.1038/s41572-020-0149-1.
6
Association between hidradenitis suppurativa, depression, anxiety, and suicidality: A systematic review and meta-analysis.化脓性汗腺炎与抑郁、焦虑和自杀倾向的关联:系统评价和荟萃分析。
J Am Acad Dermatol. 2020 Sep;83(3):737-744. doi: 10.1016/j.jaad.2019.11.068. Epub 2019 Dec 18.
7
Dietary and metabolic factors in the pathogenesis of hidradenitis suppurativa: a systematic review.饮食和代谢因素在化脓性汗腺炎发病机制中的作用:系统评价。
Int J Dermatol. 2020 Feb;59(2):143-153. doi: 10.1111/ijd.14691. Epub 2019 Oct 25.
8
Natural language processing of Reddit data to evaluate dermatology patient experiences and therapeutics.利用 Reddit 数据进行自然语言处理以评估皮肤科患者的体验和治疗效果。
J Am Acad Dermatol. 2020 Sep;83(3):803-808. doi: 10.1016/j.jaad.2019.07.014. Epub 2019 Jul 12.
9
Non-pharmacologic approaches for hidradenitis suppurativa - a systematic review.非药物治疗化脓性汗腺炎的方法 - 系统评价。
J Dermatolog Treat. 2021 Feb;32(1):11-18. doi: 10.1080/09546634.2019.1621981. Epub 2019 Jun 4.
10
Is There a Role for Antiandrogen Therapy for Hidradenitis Suppurativa? A Systematic Review of Published Data.雄激素治疗在化脓性汗腺炎中的作用?已发表数据的系统评价。
Am J Clin Dermatol. 2019 Aug;20(4):503-513. doi: 10.1007/s40257-019-00442-w.

化脓性汗腺炎与Reddit:评估患者教育中的差距

Hidradenitis Suppurativa and Reddit: Assessing Gaps in Patient Education.

作者信息

Vaidyula Vineeth R, Ouellette Samantha, Lathrop Cooper, Wassef Cindy

机构信息

School of Medicine, Icahn School of Medicine at Mount Sinai, New York, USA.

Department of Dermatology, Rutgers Robert Wood Johnson Medical School, Piscataway, USA.

出版信息

Cureus. 2025 May 8;17(5):e83736. doi: 10.7759/cureus.83736. eCollection 2025 May.

DOI:10.7759/cureus.83736
PMID:40486369
原文链接:https://pmc.ncbi.nlm.nih.gov/articles/PMC12145159/
Abstract

BACKGROUND

Hidradenitis suppurativa (HS) is a chronic autoinflammatory skin condition distinguished by recurrent lesions, including nodules, sinus tracts, and abscesses, in intertriginous sites. HS can lead to low self-esteem and social isolation and may have deleterious effects on a patient's quality of life. HS continues to be insufficiently controlled leading patients to utilize health-related social media and online forums for educational, emotional, and social support. The open-access forum, Reddit, has become a popular outlet for patients and is a valuable source for identifying potential gaps in patient education.

MATERIALS AND METHODS

Information from posts on the "Hidradenitis" Reddit page from October 14, 2021, to January 30, 2022, was extracted using the web scraping tool, ParseHub. Post content was analyzed, and questions were sorted into the following categories: "uncertainty about symptoms," "medications," "procedures," "non-pharmacological management," "non-specific management," "causes and triggers," and "miscellaneous."

RESULTS

A total of 650 questions from 617 posts were analyzed. Posts had an average of 7.1 upvotes and 9.2 comments. The number of questions per category was as follows: nonpharmacological management (139 (21.4%)), non-specific management (127 (19.5%)), miscellaneous (125 (19.2%)), medications (90 (13.9%)), uncertainty about symptoms (69 (10.6%)), causes and triggers (57 (8.8%)), and procedures (43 (6.6%)).

CONCLUSION

Our analysis of patient questions posted to the HS subreddit revealed that most patient questions were related to disease management, with non-pharmacological management being the most asked-about category. Providers can address this potential gap in patient education by inquiring about helpful products and practices from their patients and serving as a conduit for specific recommendations that align with the literature.

摘要

背景

化脓性汗腺炎(HS)是一种慢性自身炎症性皮肤病,其特征为在皮肤褶皱部位反复出现包括结节、窦道和脓肿在内的病变。HS可导致自卑和社交孤立,并可能对患者的生活质量产生有害影响。HS的控制仍然不足,导致患者利用与健康相关的社交媒体和在线论坛来获取教育、情感和社会支持。开放获取论坛Reddit已成为患者的热门交流平台,也是识别患者教育潜在差距的宝贵来源。

材料与方法

使用网络爬虫工具ParseHub提取2021年10月14日至2022年1月30日在“化脓性汗腺炎”Reddit页面上发布的帖子信息。对帖子内容进行分析,并将问题分为以下几类:“症状不确定性”、“药物”、“治疗程序”、“非药物管理”、“非特异性管理”、“病因和触发因素”以及“其他”。

结果

共分析了来自617个帖子的650个问题。帖子平均有7.1个赞和9.2条评论。各类问题的数量如下:非药物管理(139个(21.4%))、非特异性管理(127个(19.5%))、其他(125个(19.2%))、药物(90个(13.9%))、症状不确定性(69个(10.6%))、病因和触发因素(57个(8.8%))以及治疗程序(43个(6.6%))。

结论

我们对化脓性汗腺炎子版块上患者问题的分析表明,大多数患者问题与疾病管理有关,其中非药物管理是被询问最多的类别。医疗服务提供者可以通过询问患者有用的产品和做法,并作为符合文献的具体建议的渠道,来弥补患者教育方面的这一潜在差距。