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数字解决方案如何为化脓性汗腺炎患者提供全面且具同理心支持的全新机遇世界。

How Digital Solutions Might Provide a World of New Opportunities for Holistic and Empathic Support of Patients with Hidradenitis Suppurativa.

作者信息

Boucher Annie, Peters Martin, Jones Graham B

机构信息

Novartis Pharma AG, Lichtstrasse 35, 4056, Basel, Switzerland.

Novartis Pharmaceuticals, 250 Massachusetts Avenue, Cambridge, MA, 02139, USA.

出版信息

Dermatol Ther (Heidelb). 2024 Aug;14(8):1975-1981. doi: 10.1007/s13555-024-01234-9. Epub 2024 Jul 23.

DOI:10.1007/s13555-024-01234-9
PMID:39042318
原文链接:https://pmc.ncbi.nlm.nih.gov/articles/PMC11333405/
Abstract

Hidradenitis suppurativa (HS) is a complex chronic relapsing inflammatory condition anchored in the hair follicle wherein painful abscesses, nodules, and tunnels form under the skin with the potential for intermittent pus drainage and tissue scarring. Current estimates of incidence are 1-4% globally with the disease three times more prevalent in women and higher rates among Black populations. Patients with HS are also more likely to suffer from depression, anxiety, and loneliness underscoring the need for carefully approached strategies on disease awareness and interventions. Delays in formal diagnosis, which have been estimated at 7-10 years on average, impede timely provision of optimal care. Despite best intent, when patients present at a physician's office, stigmas relating to physical appearance can be exacerbated by negative interactions experienced by patients. In addition to long wait times and the dearth of available HS expert dermatology professionals, patients perceive heightened physician focus on two of the HS flare risk factors (smoking and body mass index [BMI]) as negatively impacting their care. Given the need for continual, personal, and sensitive patient support, herein we advocate for re-examination of approach to care and the leveraging of highly personalized digital support solutions. New medications which can directly or indirectly control elements of the disease and its comorbidities are also entering the marketplace. Collectively, we posit that these new developments provide opportunity for a holistic approach for patients with HS, leading to long-term engagement and improved outcomes.

摘要

化脓性汗腺炎(HS)是一种复杂的慢性复发性炎症性疾病,其发病根源在于毛囊,会在皮肤下形成疼痛性脓肿、结节和窦道,有间歇性排脓和组织瘢痕形成的可能。目前全球发病率估计为1%-4%,女性患病率是男性的三倍,黑人患病率更高。HS患者也更易患抑郁症、焦虑症和孤独症,这凸显了针对疾病认知和干预制定谨慎策略的必要性。据估计,正式诊断平均会延迟7至10年,这阻碍了及时提供最佳治疗。尽管医生本意良好,但患者就诊时,其经历的负面互动可能会加剧与外貌相关的耻辱感。除了等待时间长和缺乏HS专家皮肤科专业人员外,患者认为医生过度关注HS发作的两个风险因素(吸烟和体重指数[BMI])会对他们的治疗产生负面影响。鉴于需要持续、个性化且贴心的患者支持,在此我们主张重新审视治疗方法,并利用高度个性化的数字支持解决方案。能够直接或间接控制该疾病及其合并症的新药物也正在进入市场。我们共同认为,这些新进展为HS患者提供了采用整体治疗方法的机会,从而实现长期参与并改善治疗效果。

https://cdn.ncbi.nlm.nih.gov/pmc/blobs/b199/11333405/a579a0b1771d/13555_2024_1234_Fig2_HTML.jpg
https://cdn.ncbi.nlm.nih.gov/pmc/blobs/b199/11333405/5125583e2eac/13555_2024_1234_Fig1_HTML.jpg
https://cdn.ncbi.nlm.nih.gov/pmc/blobs/b199/11333405/a579a0b1771d/13555_2024_1234_Fig2_HTML.jpg
https://cdn.ncbi.nlm.nih.gov/pmc/blobs/b199/11333405/5125583e2eac/13555_2024_1234_Fig1_HTML.jpg
https://cdn.ncbi.nlm.nih.gov/pmc/blobs/b199/11333405/a579a0b1771d/13555_2024_1234_Fig2_HTML.jpg

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本文引用的文献

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A Critical Review of ChatGPT as a Potential Substitute for Diabetes Educators.对ChatGPT作为糖尿病教育者潜在替代品的批判性综述。
Cureus. 2023 May 1;15(5):e38380. doi: 10.7759/cureus.38380. eCollection 2023 May.
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Psychosocial Implications and Quality of Life in Patients with Hidradenitis Suppurativa Compared to Those With Atopic Dermatitis and Psoriasis: a Cross-sectional Case-control Study.与特应性皮炎和银屑病患者相比,化脓性汗腺炎患者的心理社会影响和生活质量:一项横断面病例对照研究。
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Patient Perspectives of Health System Barriers to Accessing Care for Hidradenitis Suppurativa: A Qualitative Study.患者对影响化脓性汗腺炎就诊的卫生系统障碍的看法:一项定性研究。
JAMA Dermatol. 2023 May 1;159(5):510-517. doi: 10.1001/jamadermatol.2023.0486.
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The Efficacy of Mobile Applications for Weight Loss.移动应用程序用于减肥的功效。
Curr Cardiovasc Risk Rep. 2023;17(4):83-90. doi: 10.1007/s12170-023-00717-2. Epub 2023 Mar 23.
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New AI-algorithms on smartphones to detect skin cancer in a clinical setting-A validation study.智能手机上新的人工智能算法可用于临床皮肤癌检测——一项验证研究。
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