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本文引用的文献

1
Exploring the Quality-of-Life Impact, Disease Burden, and Management Challenges of GPP: The Provider and Patient Perspective [Podcast].从提供者和患者角度探讨泛发性脓疱性银屑病的生活质量影响、疾病负担及管理挑战 [播客]
Clin Cosmet Investig Dermatol. 2023 Nov 17;16:3333-3339. doi: 10.2147/CCID.S444238. eCollection 2023.
2
Prolonged Sick Leave Before and After Diagnosis of Generalized Pustular Psoriasis: A Swedish Population-based Register Study.泛发性脓疱型银屑病诊断前后长期病假:一项瑞典基于人群的登记研究。
Acta Derm Venereol. 2023 Sep 13;103:adv6497. doi: 10.2340/actadv.v103.6497.
3
The burden associated with generalized pustular psoriasis: A Canadian population-based study of inpatient care, emergency departments, and hospital- or community-based outpatient clinics.泛发性脓疱型银屑病的负担:一项基于加拿大人群的住院治疗、急诊科以及医院或社区门诊诊所的研究。
JAAD Int. 2023 Apr 14;12:90-98. doi: 10.1016/j.jdin.2023.03.012. eCollection 2023 Sep.
4
Clinical Characteristics and Outcomes of Generalized Pustular Psoriasis Flares.泛发性脓疱型银屑病发作的临床特征和结局。
Dermatology. 2023;239(3):345-354. doi: 10.1159/000529274. Epub 2023 Feb 16.
5
Generalized Pustular Psoriasis: A Review on Clinical Characteristics, Diagnosis, and Treatment.泛发性脓疱型银屑病:临床特征、诊断及治疗综述
Dermatol Ther (Heidelb). 2023 Mar;13(3):673-688. doi: 10.1007/s13555-022-00881-0. Epub 2023 Jan 13.
6
Generalized pustular psoriasis: A global Delphi consensus on clinical course, diagnosis, treatment goals and disease management.泛发性脓疱型银屑病:关于临床病程、诊断、治疗目标及疾病管理的全球德尔菲共识
J Eur Acad Dermatol Venereol. 2023 Apr;37(4):737-752. doi: 10.1111/jdv.18851. Epub 2023 Feb 4.
7
Economic Burden of Generalized Pustular Psoriasis in Sweden: A Population-Based Register Study.瑞典泛发性脓疱型银屑病的经济负担:一项基于人群的登记研究。
Psoriasis (Auckl). 2022 May 5;12:89-98. doi: 10.2147/PTT.S359011. eCollection 2022.
8
The Prevalence and Disease Characteristics of Generalized Pustular Psoriasis.泛发性脓疱型银屑病的患病率和疾病特征。
Am J Clin Dermatol. 2022 Jan;23(Suppl 1):5-12. doi: 10.1007/s40257-021-00664-x. Epub 2022 Jan 21.
9
Trial of Spesolimab for Generalized Pustular Psoriasis.特索利单抗治疗泛发性脓疱型银屑病的试验。
N Engl J Med. 2021 Dec 23;385(26):2431-2440. doi: 10.1056/NEJMoa2111563.
10
Evaluation of a Case Series of Patients With Generalized Pustular Psoriasis in the United States.评估美国泛发性脓疱型银屑病患者的病例系列。
JAMA Dermatol. 2022 Jan 1;158(1):73-78. doi: 10.1001/jamadermatol.2021.4640.

泛发性脓疱型银屑病患者的医疗资源利用:发作和疾病严重程度的影响。

Healthcare Resource Utilization Among Patients With Generalized Pustular Psoriasis: The Impact of Flares and Disease Severity.

作者信息

Noe Megan H, Lavasani Layla, Rasouliyan Lawrence, Laouri Marianne, Rhoads Jamie L W

机构信息

Brigham and Women's Hospital, Harvard Medical School, Boston, MA, USA.

Boehringer Ingelheim Pharmaceuticals Inc, Ridgefield, CT, USA.

出版信息

J Psoriasis Psoriatic Arthritis. 2025 Jan 25:24755303251317193. doi: 10.1177/24755303251317193.

DOI:10.1177/24755303251317193
PMID:39867530
原文链接:https://pmc.ncbi.nlm.nih.gov/articles/PMC11760074/
Abstract

BACKGROUND

Generalized pustular psoriasis (GPP) is a rare, chronic, often unpredictable, severe multisystemic autoinflammatory skin disease from which patients can experience flares, episodes of widespread eruptions of painful, sterile pustules often accompanied by systemic symptoms. The impact of GPP flares and underlying GPP severity on the healthcare resource utilization (HCRU) is not well characterized.

OBJECTIVE

To quantify HCRU among US GPP patients by flare status and underlying severity.

METHODS

Outpatient electronic health record (EHR) data (2017-2023) from the OMNY Health platform were linked with claims. Patients were indexed at first EHR GPP diagnosis code and followed for 1 year. GPP flares were identified from a previously developed algorithm. All-cause hospitalizations, emergency department/urgent care (ED/UC), and outpatient visits were summarized by flare status and underlying severity. Pharmacy and total gross charges were described by number of flares.

RESULTS

A total of 335 patients were included. Patients who flared in the follow-up period (n = 205) had more hospitalizations than patients who did not flare (n = 130; 12.2% vs 6.9%; mean: 0.26 vs 0.09). ED/UC visits were similar between groups (22.9% vs 27.7%; mean: 0.54 vs 0.45), while outpatient visits were greater among patients who did not flare (69.8% vs 78.5%; mean: 5.37 vs 6.56). For patients with 0, 1, and ≥2 flares with HCRU, mean pharmacy charges ($19,887, $25,180, and $57,674, respectively) and total gross charges ($29,196, $40,079, and $52,940, respectively) increased monotonically.

CONCLUSION

GPP patients who flared and had more severe disease had greater HCRU and charges.

摘要

背景

泛发性脓疱型银屑病(GPP)是一种罕见的、慢性的、通常不可预测的严重多系统自身炎症性皮肤病,患者可能会出现病情发作,即广泛爆发疼痛性无菌脓疱,常伴有全身症状。GPP发作及潜在的GPP严重程度对医疗资源利用(HCRU)的影响尚未得到充分描述。

目的

按发作状态和潜在严重程度对美国GPP患者的HCRU进行量化。

方法

来自OMNY Health平台的门诊电子健康记录(EHR)数据(2017 - 2023年)与理赔数据相关联。患者以首次EHR中的GPP诊断代码为索引,并随访1年。GPP发作通过先前开发的算法确定。全因住院、急诊科/紧急护理(ED/UC)和门诊就诊情况按发作状态和潜在严重程度进行汇总。药房费用和总费用按发作次数进行描述。

结果

共纳入335例患者。随访期间发作的患者(n = 205)比未发作的患者(n = 130;12.2%对6.9%;平均值:0.26对0.09)有更多的住院次数。两组之间的ED/UC就诊情况相似(22.9%对27.7%;平均值:0.54对0.45),而未发作患者的门诊就诊次数更多(69.8%对78.5%;平均值:5.37对6.56)。对于发作次数为0、1和≥2次的HCRU患者,平均药房费用(分别为19,887美元、25,180美元和57,674美元)和总费用(分别为29,196美元、40,079美元和52,940美元)呈单调增加。

结论

发作且病情更严重的GPP患者的HCRU和费用更高。