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化脓性汗腺炎中的公平性与结局事件:探索现实世界中与诊断延迟相关的效应修饰因素。

Equity and Outcome Events in Hidradenitis Suppurativa: Exploring Effect Modifiers Associated with Diagnostic Delay in the Real World.

作者信息

Murray Nicole, Truman Isabel, Milligan Gary, Modi Himanshu, Adlard Nicholas

机构信息

Novartis Corporate Center (NOCC), Dublin, Ireland.

Adelphi Real World, Bollington, UK.

出版信息

Dermatol Ther (Heidelb). 2024 Dec;14(12):3211-3227. doi: 10.1007/s13555-024-01291-0. Epub 2024 Nov 2.

DOI:10.1007/s13555-024-01291-0
PMID:39487935
原文链接:https://pmc.ncbi.nlm.nih.gov/articles/PMC11604871/
Abstract

INTRODUCTION

Patients with hidradenitis suppurativa (HS) experience significantly delayed diagnoses of 7-10 years from symptom onset on average, but the reasons for this remain largely unknown. This study investigated drivers of diagnostic delay from the perspective of healthcare system equity.

METHODS

A literature review was performed to identify published factors associated with delayed HS diagnosis to inform data analysis. Clinical and demographic data from the Adelphi HS Disease Specific Programme (DSP)™, a real-world cross-sectional survey of dermatologists and their consulting patients in France, Germany, Italy, Spain, the UK and the USA in 2020/2021, were used to model factors influencing delay to diagnosis from onset of symptoms and first consultation.

RESULTS

Factors influencing delay to HS diagnosis in the literature with the most available evidence were misdiagnosis, delay in specialist referral and patient embarrassment. Data analysis revealed that increasing age was associated with reduced diagnostic delay after symptom onset. Patients with HS who were White or in Germany were also more likely to receive a faster diagnosis. Smokers, patients with concomitant conditions, or a family history of HS were slower to be diagnosed. When time to diagnosis following first consultation was assessed, increasing age was associated with quicker diagnosis. Moreover, patients with a family history of HS were diagnosed quicker, whereas those with high body mass index, more concomitant conditions, in employment, managed by multiple physicians or European were more delayed.

CONCLUSION

On the basis of a thorough analysis of real-world data, multiple factors that potentially influenced the timely diagnosis of HS have been identified. For the first time, this study quantifies the relative impact of these modifiers, providing valuable insights into areas that require attention for faster diagnoses and improved disease outcomes.

摘要

引言

化脓性汗腺炎(HS)患者从症状出现到确诊平均会有7至10年的显著延迟,但其中原因很大程度上仍不明确。本研究从医疗系统公平性的角度调查了诊断延迟的驱动因素。

方法

进行文献综述以确定与HS诊断延迟相关的已发表因素,为数据分析提供参考。来自阿德尔菲HS疾病特定项目(DSP)™的临床和人口统计学数据被用于构建影响从症状出现到首次咨询的诊断延迟因素模型,该项目是2020/2021年在法国、德国、意大利、西班牙、英国和美国对皮肤科医生及其会诊患者进行的一项真实世界横断面调查。

结果

文献中证据最多的影响HS诊断延迟的因素是误诊、专科转诊延迟和患者尴尬。数据分析显示,年龄增长与症状出现后诊断延迟的减少有关。白人或德国的HS患者也更有可能更快得到诊断。吸烟者、伴有其他疾病的患者或有HS家族史的患者诊断较慢。在评估首次咨询后的诊断时间时,年龄增长与更快诊断有关。此外,有HS家族史的患者诊断更快,而体重指数高、伴有更多其他疾病、在职、由多名医生管理或来自欧洲的患者诊断延迟更久。

结论

在对真实世界数据进行全面分析的基础上,已确定了多个可能影响HS及时诊断的因素。本研究首次量化了这些影响因素的相对影响,为需要关注以实现更快诊断和改善疾病结局的领域提供了有价值的见解。

https://cdn.ncbi.nlm.nih.gov/pmc/blobs/7c4c/11604871/688e330c61bb/13555_2024_1291_Fig4_HTML.jpg
https://cdn.ncbi.nlm.nih.gov/pmc/blobs/7c4c/11604871/30350bc0e4e5/13555_2024_1291_Fig1_HTML.jpg
https://cdn.ncbi.nlm.nih.gov/pmc/blobs/7c4c/11604871/a022b9d8b4b6/13555_2024_1291_Fig2_HTML.jpg
https://cdn.ncbi.nlm.nih.gov/pmc/blobs/7c4c/11604871/19c49fe3545a/13555_2024_1291_Fig3_HTML.jpg
https://cdn.ncbi.nlm.nih.gov/pmc/blobs/7c4c/11604871/688e330c61bb/13555_2024_1291_Fig4_HTML.jpg
https://cdn.ncbi.nlm.nih.gov/pmc/blobs/7c4c/11604871/30350bc0e4e5/13555_2024_1291_Fig1_HTML.jpg
https://cdn.ncbi.nlm.nih.gov/pmc/blobs/7c4c/11604871/a022b9d8b4b6/13555_2024_1291_Fig2_HTML.jpg
https://cdn.ncbi.nlm.nih.gov/pmc/blobs/7c4c/11604871/19c49fe3545a/13555_2024_1291_Fig3_HTML.jpg
https://cdn.ncbi.nlm.nih.gov/pmc/blobs/7c4c/11604871/688e330c61bb/13555_2024_1291_Fig4_HTML.jpg

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本文引用的文献

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Adherence to Hidradenitis Suppurativa Treatment.对化脓性汗腺炎治疗的坚持。
Am J Clin Dermatol. 2024 Jul;25(4):585-594. doi: 10.1007/s40257-024-00871-2. Epub 2024 Jun 11.
2
Real-world evidence generation from patients, their caregivers and physicians supporting clinical, regulatory and guideline decisions: an update on Disease Specific Programmes.来自患者、其护理人员和医生的真实世界证据生成,以支持临床、监管和指南决策:疾病特定项目的最新情况
Curr Med Res Opin. 2023 Dec;39(12):1707-1715. doi: 10.1080/03007995.2023.2279679. Epub 2023 Dec 15.
3
Genetic Variants Associated With Hidradenitis Suppurativa.
与化脓性汗腺炎相关的遗传变异。
JAMA Dermatol. 2023 Sep 1;159(9):930-938. doi: 10.1001/jamadermatol.2023.2217.
4
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.
5
African American race is a risk factor for severe hidradenitis suppurativa.非裔美国人种是化脓性汗腺炎严重程度的一个风险因素。
Int J Dermatol. 2023 May;62(5):657-663. doi: 10.1111/ijd.16428. Epub 2022 Oct 2.
6
Long-term risk of death in patients with hidradenitis suppurativa.化脓性汗腺炎患者的长期死亡风险。
Int J Dermatol. 2023 May;62(5):631-636. doi: 10.1111/ijd.16409. Epub 2022 Sep 13.
7
Good Publication Practice (GPP) Guidelines for Company-Sponsored Biomedical Research: 2022 Update.良好的出版实践(GPP)指南:公司赞助的生物医学研究:2022 更新版。
Ann Intern Med. 2022 Sep;175(9):1298-1304. doi: 10.7326/M22-1460. Epub 2022 Aug 30.
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Hidradenitis Suppurativa: A Perspective on Genetic Factors Involved in the Disease.化脓性汗腺炎:关于该疾病相关遗传因素的观点。
Biomedicines. 2022 Aug 21;10(8):2039. doi: 10.3390/biomedicines10082039.
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