Journal of Investigative Dermatology最新文献_第8页

Tape strip multi-omic analysis of pediatric atopic dermatitis patients show greater immune and barrier abnormalities in the setting of comorbid food allergies 儿童特应性皮炎患者的胶带多组学分析显示，在合并症食物过敏的情况下，免疫和屏障异常更大

IF 5.7 2区医学 Q1 DERMATOLOGY

Journal of Investigative Dermatology

Pub Date : 2026-03-01 Epub Date: 2026-03-09 DOI: 10.1016/S0022-202X(26)00633-0

Daniel Liu BA , Jonathan Bar MD , Panipak Tembonnark MD , Ester Del Duca MD, PhD , Yeriel Estrada MS , Helen He MD , Emma Guttman-Yassky MD, PhD

Atopic dermatitis (AD) and food allergy (FA) often co-occur and may share immune and barrier dysfunction. Early barrier disruption promotes systemic allergen sensitization, contributing to atopic diseases. Concurrent FA can worsen AD symptoms and alter the skin barrier and microbiome. Using a multi-omics approach via tape strips, we compare molecular features of pediatric AD with and without comorbid FA. Tape strips from lesional (LS) and nonlesional (NL) skin of children with AD+FA (n=17), AD only (n=12), and controls (n=8) were analyzed by RNAseq and OLINK proteomics. Differentially expressed genes/DEGs and proteins/DEPs were defined by fold change>1.5 and FDR<0.05. All AD patients showed immune and barrier alterations vs HC in LS and NL skin, but FA further exacerbated inflammation in LS skin, with 1260 DEGs (638up/622down) & 236 DEPs (227up/9down) in AD+FA vs 600 DEGs (277up/323down) & 193 DEPs (190up/3down) in AD only. Th1 (CXCL10/MX1), Th2 (CCL13/24,IL10), and innate immunity markers (IL6) were more upregulated in AD+FA. Th17 skewing, while universal, was stronger in AD+FA (IL17A/ 17F,CXCL1). Upregulation of pruritus (IL31), histamine (HRH4/HDC), and eosinophil markers (RNASE2) was unique to AD+FA. Several inflammatory (CXCL1/6,IL6,S100A12), pruritic (OSM), and profibrotic (COL1A1) markers showed strong concordance between transcriptomic and proteomic data. FA defines a more inflammatory AD endotype, supporting the need for more intensive immune therapy in this group.

特应性皮炎（AD）和食物过敏（FA）经常共同发生，并可能共享免疫和屏障功能障碍。早期屏障破坏促进全身性过敏原致敏，导致特应性疾病。并发FA可加重AD症状，改变皮肤屏障和微生物组。采用多组学方法，通过胶带条，我们比较了儿童AD的分子特征与没有合并症FA。采用RNAseq和OLINK蛋白质组学对AD+FA患儿（n=17）、AD患儿（n=12）和对照组（n=8）的病变（LS）和非病变（NL）皮肤胶带条进行分析。差异表达的基因/DEGs和蛋白/DEPs以倍数变化（fold change>1.5）和FDR<；0.05定义。与HC相比，所有AD患者在LS和NL皮肤中均表现出免疫和屏障改变，但FA进一步加剧了LS皮肤的炎症，AD+FA患者的DEPs为1260度（638上升/622下降）和236度（227上升/9下降），而AD仅为600度（277上升/323下降）和193度（190上升/3下降）。Th1 （CXCL10/MX1）、Th2 （CCL13/24、IL10）和先天免疫标志物（IL6）在AD+FA中上调较多。Th17偏斜，虽然普遍，但在AD+FA （IL17A/ 17F,CXCL1）中更强。瘙痒症（IL31）、组胺（HRH4/HDC）和嗜酸性粒细胞标志物（RNASE2）的上调是AD+FA所特有的。一些炎症（CXCL1/6,IL6,S100A12），瘙痒（OSM）和纤维化（COL1A1）标记在转录组学和蛋白质组学数据之间显示出很强的一致性。FA定义了一种炎症性更强的AD内型，支持该组需要更强化的免疫治疗。

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引用次数: 0

Stigmatization and Mental Health Impact of Alopecia Areata 斑秃的污名化和心理健康影响

IF 5.7 2区医学 Q1 DERMATOLOGY

Journal of Investigative Dermatology

Pub Date : 2026-03-01 Epub Date: 2026-03-09 DOI: 10.1016/S0022-202X(26)00587-7

Katie Hummel BS , Angela Yang MD , Marisa Fat BS , Amy Paller MD

Alopecia areata (AA) is a hair loss disorder that can cause stigma, but the impact of this stigma on mental health and quality of life (QOL) is poorly understood. This cross-sectional PeDRA study at 32 sites measured stigma in pediatric AA and its relation to disease visibility, severity, mental health, and QOL. Participants were aged 8—17 years (mean 13.8) and a parent. Stigma was measured by PROMIS Stigma-Skin and disease visibility/severity by the child (n=189), caregiver, and physician. QOL was measured by the Skindex-Teen and depression, anxiety, and peer relationships using PROMIS child and proxy tools. Stigma was strongly associated with reduced quality of life (r=0.70) and depression (r=0.60), moderately with anxiety (r=0.57) and proxy-reported stigma (r=0.56), and weakly with poor peer relationships (r=0.38). With PROMIS T scores >60 indicating moderate impact, 17.5% of children with AA screened positive for moderate depression and 12.2% for moderate anxiety. 57 parents reported bullying, with 94.7% (54/57) occurring at school; fewer reported bullying at home, online, or elsewhere. While stigma did not correlate with self-reported severity or visibility, stigma levels were higher among those with moderate/severe vs. mild AA. Children reported less visibility than parents and physicians, suggesting greater interpretation of AA extent/impact by adults. Stigma reduces quality of life in children with AA, underscoring the need for detection and psychosocial support.

斑秃（AA）是一种可能导致耻辱感的脱发疾病，但这种耻辱感对心理健康和生活质量（QOL）的影响知之甚少。本横断面PeDRA研究在32个地点测量了儿童AA的耻辱感及其与疾病可见性、严重程度、心理健康和生活质量的关系。参与者年龄在8-17岁（平均13.8岁），父母一方。由儿童（n=189）、护理人员和医生通过PROMIS柱头-皮肤和疾病可见性/严重程度测量柱头。生活质量由皮肤指数-青少年和抑郁，焦虑和同伴关系测量，使用PROMIS儿童和代理工具。病耻感与生活质量下降（r=0.70）和抑郁（r=0.60）密切相关，与焦虑（r=0.57）和代理报告的病耻感（r=0.56）中度相关，与不良同伴关系（r=0.38）关系较弱。PROMIS T评分为60，显示中度影响，17.5%的AA儿童筛查为中度抑郁阳性，12.2%为中度焦虑阳性。57名家长报告了欺凌行为，其中94.7%（54/57）发生在学校；在家、网上或其他地方遭受欺凌的报告较少。虽然病耻感与自我报告的严重程度或可见度无关，但中度/重度AA患者的病耻感水平高于轻度AA患者。与父母和医生相比，儿童报告的能见度较低，这表明成年人对AA程度/影响的解释更大。耻辱感降低了嗜酒成瘾儿童的生活质量，强调了检测和社会心理支持的必要性。

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引用次数: 0

Comprehensibility of Spanish Patient Education Materials for Pruritic Dermatoses: A Comparison Between the Society for Pediatric Dermatology and Artificial Intelligence 西班牙瘙痒性皮肤病患者教育材料的可理解性：儿童皮肤病学会与人工智能的比较

IF 5.7 2区医学 Q1 DERMATOLOGY

Journal of Investigative Dermatology

Pub Date : 2026-03-01 Epub Date: 2026-03-09 DOI: 10.1016/S0022-202X(26)00591-9

Isha Gandhi BS , Tatiana Correa MD , Nabiha Chaudry BS , Lana Kamel BS , Robert Adler BA , Chase Fishman BS , Pablo Monterroso BS , Jenna Dick PhD , Steven Fishman MD

Lack of accessible, linguistically appropriate Spanish education materials exacerbates healthcare inequities. The National Institutes of Health (NIH) recommends readability should not exceed a sixth grade reading level. Here, we evaluated the Spanish-language comprehensibility of patient education materials (PEMs) for five common pruritic dermatoses, including psoriasis, atopic dermatitis, and allergic contact dermatitis, from the Society for Pediatric Dermatology (SPD), in comparison to materials generated by ChatGPT 4o. Ten validated Spanish readability tools were used, including the Fernández-Huerta Index and García López Formula, to calculate U.S. grade-level equivalents and reading levels. SPD materials averaged an 8th-grade reading level, while ChatGPT-generated texts averaged a 5th -grade level, when prompted to respond at a 6th-grade reading level. Paired t-test revealed a statistically significant difference in comprehensibility between the two sources (t(4) = 5.57, p <0.01). All artificial intelligence (AI) generated texts were reviewed by a fluent Spanish-speaking physician for medical and linguistic accuracy. A limitation of this study is the lack of Spanish-language handouts for certain dermatoses from the SPD, such as urticaria, under-scoring the need for accessible translated resources in pediatric dermatology. Our findings suggest that AI may improve Spanish-language accessibility in pediatric dermatology.

缺乏可获得的、语言上合适的西班牙语教材加剧了医疗保健的不平等。美国国立卫生研究院（NIH）建议可读性不应超过六年级的阅读水平。在这里，我们评估了来自儿科皮肤病学会（SPD）的五种常见瘙痒性皮肤病患者教育材料（PEMs）的西班牙语可理解性，包括牛皮癣、特应性皮炎和过敏性接触性皮炎，并与ChatGPT 40生成的材料进行了比较。使用了10个经过验证的西班牙语可读性工具，包括Fernández-Huerta指数和García López公式，来计算美国年级水平和阅读水平。SPD材料的平均阅读水平为8年级，而chatgpt生成的文本的平均阅读水平为5年级，当提示回复时，阅读水平为6年级。配对t检验显示，两种来源的可理解性差异有统计学意义（t(4) = 5.57, p <0.01）。所有人工智能（AI）生成的文本都由一位讲流利西班牙语的医生审查，以确保医学和语言的准确性。本研究的一个局限性是缺乏来自SPD的某些皮肤病（如荨麻疹）的西班牙语讲义，这强调了儿科皮肤病学中可访问的翻译资源的必要性。我们的研究结果表明，人工智能可以提高儿科皮肤科的西班牙语可及性。

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引用次数: 0

Systemic Treatments & Outcomes in Pediatric Atopic Dermatitis 儿童特应性皮炎的全身治疗和预后

IF 5.7 2区医学 Q1 DERMATOLOGY

Journal of Investigative Dermatology

Pub Date : 2026-03-01 Epub Date: 2026-03-09 DOI: 10.1016/S0022-202X(26)00638-X

Rachel Zhang BS , Sumrah Jilani BS , Rebecca Urbonas BS , John Xiang BS , Jodi Segal MD, MPH , Harold Lehmann MD , Joy Wan MD, MSCE

Atopic dermatitis (AD) is a common inflammatory skin condition that affects approximately 20% of the pediatric population, and up to 33% have moderate to severe disease. Yet, there is limited research comparing systemic treatment options in pediatric patients. This project aims to advance comparative effectiveness research (CER) for these treatments in pediatric AD through the development of a computable phenotype. The first aim focuses on creating and validating a phenotype for pediatric AD using electronic health record (EHR) data. By leveraging large clinical research networks such as Patient-Centered Outcomes Research Network (PCORnet), we will identify children with confirmed AD through EHR variables. This will be validated against gold standard classification with manual review of EHRs. The second aim is to emulate a target trial to compare the effectiveness and safety of dupilumab and methotrexate, two commonly used systemic treatments for pediatric AD, with observational EHR data from Johns Hopkins University. We hypothesize that dupilumab is associated with greater drug survival, less topicals use and fewer adverse effects compared to methotrexate. While methotrexate and dupilumab have been compared in some studies, this emulated trial will serve as proof-of-principle and lay the groundwork for a methodologic framework to evaluate other existing and emerging AD therapies. The study’s results will ultimately help optimize treatment strategies for pediatric AD.

特应性皮炎（AD）是一种常见的炎症性皮肤疾病，影响了大约20%的儿科人口，高达33%的儿童患有中度至重度疾病。然而，比较儿科患者的全身治疗方案的研究有限。该项目旨在通过开发可计算表型来推进这些治疗在儿童AD中的比较有效性研究（CER）。第一个目标侧重于使用电子健康记录（EHR）数据创建和验证儿童AD的表型。通过利用大型临床研究网络，如以患者为中心的结果研究网络（PCORnet），我们将通过电子病历变量识别确诊AD的儿童。这将根据金标准分类进行验证，并对电子病历进行人工审核。第二个目的是模拟一个目标试验，比较dupilumab和甲氨蝶呤的有效性和安全性，这两种常用的儿童AD系统治疗方法，与约翰霍普金斯大学的观察性电子病历数据。我们假设dupilumab与甲氨蝶呤相比具有更高的药物生存期，更少的局部使用和更少的不良反应。虽然在一些研究中已经比较了甲氨蝶呤和杜匹单抗，但该模拟试验将作为原理证明，并为评估其他现有和新兴AD治疗方法的方法学框架奠定基础。这项研究的结果将最终有助于优化儿童AD的治疗策略。

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引用次数: 0

Adherence to oral antibiotic duration guidelines for acne treatment in transgender adolescents: a retrospective cohort study 跨性别青少年痤疮治疗依从口服抗生素疗程指南：一项回顾性队列研究

IF 5.7 2区医学 Q1 DERMATOLOGY

Journal of Investigative Dermatology

Pub Date : 2026-03-01 Epub Date: 2026-03-09 DOI: 10.1016/S0022-202X(26)00628-7

Courtney Smith MS , Howa Yeung MD, MSc , Carol E Cheng MD , Marcia Hogeling MD

The American Academy of Dermatology guidelines recommend limiting oral antibiotics for acne to ≤3 months to minimize antimicrobial resistance. Prolonged antibiotic courses are common in adolescents, particularly among primary care patients. Transgender adolescents face healthcare access barriers and develop acne after starting testosterone, yet guideline adherence is unknown. This retrospective cohort study aims to compare prolonged oral antibiotic use for acne in transgender adolescents by prescriber specialty. Analysts will abstract data from UCLA Health records of adolescents aged 10-19 years with acne diagnoses and oral antibiotic prescriptions (2013-2025). Transgender status will be identified using validated algorithms based on demographics, diagnoses, hormone use, and clinical notes. Oral antibiotics are ≥30 days tetracycline-class with courses separated by >14-day gaps. The primary exposure is prescriber specialty and primary outcome is proportion of 90+ day courses. Multivariable regression will compare prescriptions by specialty (primary care or dermatology), adjusting for age, year, and insurance, with patient-clustered standard errors. Secondary analyses stratify by gender identity, hormone use, and race/ethnicity. We hypothesize primary care courses more often exceed 90 days, particularly with testosterone use. Limitations include single-center design. This research identifies care gaps to inform guide-line-adherent treatment of acne in transgender adolescents.

美国皮肤病学会指南建议将痤疮口服抗生素限制在≤3个月，以尽量减少抗菌素耐药性。延长抗生素疗程在青少年中很常见，特别是在初级保健患者中。跨性别青少年在开始使用睾酮后面临获得医疗保健的障碍和出现痤疮，但指南的依从性尚不清楚。本回顾性队列研究的目的是比较长期口服抗生素使用痤疮的跨性别青少年处方专业。分析人员将从加州大学洛杉矶分校的健康记录中提取数据，其中包括2013-2025年10-19岁的患有痤疮诊断和口服抗生素处方的青少年。变性身份将通过基于人口统计、诊断、激素使用和临床记录的有效算法来确定。口服抗生素为≥30天的四环素类，疗程间隔14天。主要暴露是处方医师的专长，主要结果是90天以上疗程的比例。多变量回归将比较专科（初级保健或皮肤科）处方，调整年龄、年份和保险，与患者聚集的标准误差。二级分析按性别认同、激素使用和种族/民族进行分层。我们假设初级保健疗程通常超过90天，特别是使用睾酮。局限性包括单中心设计。本研究确定护理差距，为跨性别青少年痤疮的指导方针治疗提供信息。

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引用次数: 0

Mixed methods analysis of emergent clinical infantile hemangioma teleconsultation questions from primary care providers to pediatric dermatologists: directions for educational outreach 从初级保健提供者到儿科皮肤科医生的急诊临床婴儿血管瘤远程会诊问题的混合方法分析：教育推广的方向

IF 5.7 2区医学 Q1 DERMATOLOGY

Journal of Investigative Dermatology

Pub Date : 2026-03-01 Epub Date: 2026-03-09 DOI: 10.1016/S0022-202X(26)00560-9

Sofia Guelfand Warnken MD , Aditi Murthy MD , Carla Torres-Zegarra MD , Elizabeth Garcia Creighton BA

Introduction: Infantile hemangiomas (IHs) are common vascular tumors in infants, often first evaluated by primary care providers (PCPs). While many are benign, some require urgent intervention due to location, rapid growth, or complications. Despite existing referral protocols, delays in dermatology access persist. Our institution implemented two telehealth tools—e-Consults and the urgent “One Call” system—to support timely triage and care. Methods: We conducted a mixed-methods cross-sectional study of 72 urgent IH-related consultations (44 calls, 28 e-Consults) between March 2024—March 2025. We analyzed demographic and clinical data and performed qualitative content analysis of provider-submitted questions using an inductive-deductive approach. Results: Three major content themes emerged: (1) Diagnostic uncertainty—PCPs often questioned whether lesions were IHs or other birthmarks and sought guidance on natural history. (2) Referral decision-making—Providers expressed uncertainty about urgency, timing, and criteria for referral, especially for high-risk or rapidly changing lesions. (3) Acute management—PCPs sought help with initiating treatment, distinguishing when to use topical vs oral beta-blockers, evaluating complications such as ulceration, and determining need for imaging. These themes reflect the real-time decision-making challenges PCPs face in IH care. Conclusion: Telehealth tools provide critical support to PCPs managing IHs, addressing gap

婴儿血管瘤（IHs）是婴儿常见的血管肿瘤，通常首先由初级保健提供者（pcp）评估。虽然许多是良性的，但由于位置，快速生长或并发症，有些需要紧急干预。尽管有现有的转诊协议，皮肤科就诊的延误仍然存在。我们的机构实施了两种远程医疗工具——电子咨询和紧急“一次呼叫”系统——以支持及时的分类和护理。方法：我们对2024年3月至2025年3月期间72例紧急ih相关咨询（44次电话咨询，28次电子咨询）进行了混合方法横断面研究。我们分析了人口统计和临床数据，并使用归纳演绎方法对提供者提交的问题进行了定性内容分析。结果：出现了三个主要的内容主题：(1)诊断不确定性- pcp经常质疑病变是IHs还是其他胎记，并寻求自然史指导。(2)转诊决策：医生对转诊的紧急程度、时间和标准表示不确定，特别是对高危或快速变化的病变。(3)急性处理- pcp寻求帮助，开始治疗，区分何时使用局部和口服β受体阻滞剂，评估并发症，如溃疡，并确定需要影像学检查。这些主题反映了pcp在卫生保健中面临的实时决策挑战。结论：远程医疗工具为pcp管理his，解决差距提供了关键支持

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引用次数: 0

Pediatric patients with Parry-Romberg syndrome or progressive hemifacial atrophy: clinical characteristics, evolution, and treatment Parry-Romberg综合征或进行性面瘫的儿科患者：临床特征、演变和治疗

IF 5.7 2区医学 Q1 DERMATOLOGY

Journal of Investigative Dermatology

Pub Date : 2026-03-01 Epub Date: 2026-03-09 DOI: 10.1016/S0022-202X(26)00567-1

Maria Garcia Romero MD, MPH , Maria Guadalupe Zuniga MD , Mariana Rivera MD , Selma Scheffler MD

Background. Parry-Romberg syndrome (PRS) is a rare disorder characterized by hemifacial, unilateral, progressive loss of adipose tissue, muscles, cartilage, and bone structures. It is a variant of linear morphea, an autoimmune disease in which sclerosis with diffuse thickening and induration of the skin. Methodology. Longitudinal, ambispective, observational, descriptive study of patients aged 0 to 18 years with diagnosis of PRS treated at the Instituto Nacional de Pediatría from 2020 to 2025. Descriptive statistics were used to analyze the variables. Results. We included 8 patients, 4 were female. 4 had right face involvement. The mean age at presentation was 4.5 ±2 years, at diagnosis 8 ±2.9 years. The most frequent superficial clinical findings were hyper/hypopigmentation (8), dermal (8), and epidermal atrophy (5). Deep involvement included subcutaneous tissue atrophy (8), facial asymmetry (8), and bone atrophy (6). All had associated abnormalities: maxillofacial (7), ophthalmological (6), and neurological (2). All patients received ≥2 systemic immunosuppressants and 4 underwent facial lipostructure. Conclusions. In this study, manifestations of PRS initiated in preschool age and diagnosis was delayed 3.5 years. Hyper/hypopigmentation, dermal and subcutaneous tissue, and facial asymmetry were present in all patients. All patients received systemic immunosuppressive treatment and 4 also had corrective procedures, recommended when the disease has been inactive for ≥1 year.

背景。Parry-Romberg综合征（PRS）是一种罕见的疾病，其特征是半面部，单侧，脂肪组织，肌肉，软骨和骨结构的进行性损失。它是线状脑脊液的一种变体，线状脑脊液是一种自身免疫性疾病，其硬化伴皮肤弥漫性增厚和硬化。方法。纵向、双视角、观察性、描述性研究，研究对象为2020年至2025年在国立研究所Pediatría治疗的0至18岁诊断为PRS的患者。采用描述性统计对变量进行分析。结果。我们纳入8例患者，其中4例为女性。4例右脸受累。发病时平均年龄为4.5±2岁，确诊时平均年龄为8±2.9岁。最常见的浅表临床表现为色素沉着(8)、真皮(8)和表皮萎缩(5)。深度受累包括皮下组织萎缩(8)、面部不对称(8)和骨萎缩(6)。所有患者均有相关异常：颌面（7例）、眼科（6例）和神经系统（2例）。所有患者均接受≥2种全身免疫抑制剂治疗，4例接受面部脂肪结构检查。结论。在本研究中，PRS的表现开始于学龄前，诊断延迟了3.5年。所有患者均出现色素沉着、皮肤和皮下组织以及面部不对称。所有患者均接受了全身免疫抑制治疗，其中4例还接受了矫正手术，建议在疾病不活跃≥1年时进行。

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引用次数: 0

Use of etanercept in reactive infectious mucocutaneous eruption (RIME): a retrospective case series 依那西普在反应性感染性粘膜皮肤疹（RIME）中的应用：回顾性病例系列

IF 5.7 2区医学 Q1 DERMATOLOGY

Journal of Investigative Dermatology

Pub Date : 2026-03-01 Epub Date: 2026-03-09 DOI: 10.1016/S0022-202X(26)00568-3

Tracy Bui MD , Kacey Bui PhD , Christina Boull MD

Reactive infectious mucocutaneous eruption (RIME) cases have surged over the last several years. Diagnostic criteria were recently proposed as a postinfectious mucocutaneous eruptive process with an infectious trigger. While skin manifestations are variable, the mucocutaneous lesions can cause long-term complications like ocular and genital scarring. Effective treatment strategies are needed to help minimize disease duration and morbidity. Traditionally, systemic steroids have been the first-line treatment for RIME but the impact of this intervention is unclear. Etanercept has been reported to be beneficial for patients with SJS/ TEN, which shares the clinical mucocutaneous features of RIME. The use of etanercept for RIME in children has only been reported in one small case series. Here, we describe 3 children treated successfully with adjunctive etanercept for RIME. Our patients are young, spanning 2-16 years of age with severe oral, ocular, and urogenital mucocutaneous involvement. In one child with recurrent RIME, her clinical improvement with etanercept was much more rapid than past treatments with systemic steroid therapy. In all cases, skin and mucocutaneous reactions resolved by day 16. All patients tolerated etanercept without complications or other systemic or cutaneous infections. While further study is needed, this series adds to the evidence that etanercept may be a safe and effective treatment for children with RIME.

反应性感染性粘膜皮肤疹（RIME）病例在过去几年中激增。最近提出的诊断标准是感染后皮肤粘膜爆发过程与感染触发。虽然皮肤表现不同，但皮肤粘膜病变可引起长期并发症，如眼部和生殖器瘢痕。需要有效的治疗策略来帮助减少疾病持续时间和发病率。传统上，全身性类固醇一直是RIME的一线治疗方法，但这种干预的影响尚不清楚。据报道，依那西普对SJS/ TEN患者有益，SJS/ TEN具有RIME的临床粘膜皮肤特征。在儿童中使用依那西普治疗RIME仅在一个小病例系列中有报道。在这里，我们描述了3例使用辅助依那西普治疗RIME的儿童。我们的患者年轻，年龄在2-16岁之间，有严重的口腔、眼部和泌尿生殖器粘膜皮肤受累。在一名复发性RIME患儿中，依那西普的临床改善要比过去的全身类固醇治疗快得多。在所有病例中，皮肤和粘膜反应在第16天消退。所有患者耐受依那西普，无并发症或其他全身或皮肤感染。虽然需要进一步的研究，但这一系列的研究增加了依那西普可能是一种安全有效的治疗儿童雾蒙蒙的证据。

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引用次数: 0

Living with Gorlin Syndrome: Quality of Life Findings from the National Registry 与戈林综合症一起生活：来自国家登记处的生活质量发现

IF 5.7 2区医学 Q1 DERMATOLOGY

Journal of Investigative Dermatology

Pub Date : 2026-03-01 Epub Date: 2026-03-09 DOI: 10.1016/S0022-202X(26)00584-1

Jordan Bui BS , Meredith Weiss JD , Jean Pickford BS , Joyce Teng MD, PhD

The Gorlin Syndrome Alliance has a national registry for patients affected by Gorlin Syndrome (GS) or Basal Cell Nevus Syndrome. A quality of life survey was sent out through this registry from June 2021-July 2025. There were 116 respondents and 92 participants completed the survey (79.3% completion rate). 66% of the participants were female and 26% were male. Participants were asked to report how often they felt a particular emotion over the past week due to their GS diagnosis: 27% felt anxious, 20% felt sad, and 12% felt angry. When asked how worried participants were about when the next lesion would appear, 20% were worried and 39% were not worried. However 34% were worried about needing surgery for a new lesion and 23% were not worried. 42% of respondents reported not avoiding leisure or social activities and 55% reported not avoiding intimate relationships due to their condition. 49% reported having fears about their future due to GS and 55% reported dealing with some aspect of their condition on a daily basis. 44% reported that their appearance has not prevented them from feeling doing things that they want to do, but 49% reported feeling self conscious about their appearance. As one of the largest survey studies for quality of life in GS, this project provides insight into how GS may impact individual self-perception and future more so than their interactions with the world around them.

Gorlin综合征联盟拥有Gorlin综合征（GS）或基底细胞痣综合征患者的全国登记。从2021年6月到2025年7月，通过该登记处发送了一份生活质量调查。调查对象116人，完成调查92人，完成率79.3%。66%的参与者是女性，26%是男性。参与者被要求报告他们在过去一周因GS诊断而感到某种特定情绪的频率：27%感到焦虑，20%感到悲伤，12%感到愤怒。当被问及参与者对下一个病变何时出现有多担心时，20%的人担心，39%的人不担心。然而，34%的人担心需要手术治疗新的病变，23%的人不担心。42%的受访者表示，由于他们的病情，他们没有避免休闲或社交活动，55%的受访者表示，他们没有避免亲密关系。49%的人表示对GS的未来感到恐惧，55%的人表示每天都在处理自己的某些方面。44%的人表示，他们的外表并没有阻止他们做自己想做的事情，但49%的人表示，他们对自己的外表很在意。作为最大的GS生活质量调查研究之一，该项目提供了关于GS如何影响个人自我感知和未来的洞察，而不是他们与周围世界的互动。

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引用次数: 0

Evaluating Psychosocial Impact in Epidermolysis Bullosa: A Cross-Sectional Survey Study 评估大疱性表皮松解症的社会心理影响：一项横断面调查研究

IF 5.7 2区医学 Q1 DERMATOLOGY

Journal of Investigative Dermatology

Pub Date : 2026-03-01 Epub Date: 2026-03-09 DOI: 10.1016/S0022-202X(26)00583-X

Lynna Yang MD , Iris Dingyuan Sun BA , Kennedy Gallagher BA , Amy Paller MD, MS

Epidermolysis bullosa (EB) is a rare genetic skin disorder marked by skin fragility and chronic pain. We conducted a cross-sectional survey to assess the psychosocial burden of EB using validated outcome measures: PROMIS (Patient-Reported Outcomes Measurement Information System), QOLEB (Quality of Life Evaluation in EB), and Child-Adolescent Bullying Scale (CABS-9). Participants were recruited through dermatology clinics, advocacy groups, and social media. A total of 100 responses were collected (54% Dystrophic EB), including 56 adults (mean age 38, SD 19) and 44 pediatric patients (mean age 9.5, SD 4.8). Among adults, 69% reported being single, 61% were unemployed, and 11% were part-time. 17% percent of pediatric participants were homeschooled. Psychiatric illness was reported in 41% of adults and 43% of children aged 8—17, most commonly anxiety, depression, PTSD, and ADHD; no psychiatric illness was reported in children under age 8. Among adults, PROMIS showed elevated anxiety (T = 57.0*) and stigma (T = 55.7*) comparing to general population. Pediatric scores showed elevated anxiety (T = 58.4*), fatigue (T = 57.4*), and reduced peer relationships (T = 39.5*). The mean adult QOLEB score was 19.5 (SD 9.8), indicating moderate functional burden. The mean pediatric CABS-9 score was 18.8 (SD 9.8), consistent with moderate bullying exposure. These findings underscore the high emotional and social burden associated with EB and the need for integrated psychosocial support.

大疱性表皮松解症（EB）是一种罕见的遗传性皮肤病，以皮肤脆弱和慢性疼痛为特征。我们进行了一项横断面调查，使用经过验证的结果测量方法来评估EB的社会心理负担：PROMIS（患者报告的结果测量信息系统），QOLEB （EB的生活质量评估）和儿童-青少年欺凌量表（CABS-9）。参与者是通过皮肤科诊所、倡导团体和社交媒体招募的。共收集100份回复（54%为营养不良性EB），包括56名成人（平均年龄38岁，SD 19）和44名儿科患者（平均年龄9.5岁，SD 4.8）。在成年人中，69%的人单身，61%的人失业，11%的人兼职。17%的儿科参与者在家接受教育。41%的成年人和43%的8-17岁儿童患有精神疾病，最常见的是焦虑、抑郁、创伤后应激障碍和多动症；8岁以下儿童无精神疾病报告。在成人中，与一般人群相比，PROMIS表现出更高的焦虑（T = 57.0*）和耻辱感（T = 55.7*）。儿童得分显示焦虑升高（T = 58.4*），疲劳（T = 57.4*），同伴关系减少（T = 39.5*）。成人平均QOLEB评分为19.5 (SD 9.8)，功能负担中等。儿童CABS-9平均得分为18.8 (SD 9.8)，与中度欺凌暴露一致。这些发现强调了与EB相关的高情感和社会负担以及对综合社会心理支持的需求。

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