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Effectiveness of Carbon Dioxide Cryotherapy for the Treatment of Localized Cutaneous Leishmaniasis in Ethiopia 二氧化碳冷冻疗法治疗埃塞俄比亚局部皮肤利什曼病的有效性
IF 0.5 Pub Date : 2025-05-19 DOI: 10.1002/jvc2.70061
Feleke Tilahun Zewdu, Saba Maria Lambert, Michael Marks, Yematawork Kebede Aragaw, Derese Bekele Daba, Kassahun Alemu, Endalamaw Gadisa, Stephen L. Walker

Background

Cutaneous leishmaniasis (CL) is a public health problem in Ethiopia. Diagnosis is often delayed, and treatment options are limited. Liquid nitrogen cryotherapy is a recommended treatment but not widely available. Carbon dioxide (CO2) cryotherapy is used for the prevention of cervical cancer and is widely available in Ethiopia and might be a suitable therapy for treating localized CL.

Objectives

The aim of this short report is to assess the effectiveness of carbon dioxide cryotherapy for the treatment of CL in CL treatment centre, Ethiopia.

Methods

We performed a prospective study assessing the effectiveness of CO2 cryotherapy for the treatment of localized CL between September 2022 and June 2023 at an established CL treatment centre.

Results

Seventeen individuals with 24 CL lesions were enrolled. Twelve (70.6%) were confirmed using a skin slit smear and five by histopathology (29.4%). Nine (52.9%) individuals received a single session of CO2 cryotherapy, five received two (29.4%) and three (17.65%) received three sessions of cryotherapy. At Day 90, 16 participants were assessed and 14 (82.4%) had healed.

Conclusions

CO2 cryotherapy shows promise as a potential treatment strategy for CL. Formal evaluations are required.

背景皮肤利什曼病是埃塞俄比亚的一个公共卫生问题。诊断常常延迟,治疗选择有限。液氮冷冻疗法是一种推荐的治疗方法,但并没有广泛应用。二氧化碳(CO2)冷冻疗法用于预防宫颈癌,在埃塞俄比亚广泛使用,可能是治疗局部CL的合适疗法。这篇简短报告的目的是评估二氧化碳冷冻疗法在埃塞俄比亚CL治疗中心治疗CL的有效性。方法:在2022年9月至2023年6月期间,我们在一个已建立的CL治疗中心进行了一项前瞻性研究,评估CO2冷冻治疗局部CL的有效性。结果17例24个CL病变。12例(70.6%)经皮肤切片涂片确诊,5例(29.4%)经组织病理学确诊。9人(52.9%)接受了单次CO2冷冻治疗,5人接受了两次(29.4%),3人(17.65%)接受了三次冷冻治疗。在第90天,16名参与者接受评估,14名(82.4%)治愈。结论CO2冷冻治疗是一种潜在的治疗策略。需要进行正式的评估。
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引用次数: 0
Plantar Nodular Lesion in A 22-Year-Old Immunocompetent Female Patient 22岁免疫正常女性患者足底结节性病变
IF 0.5 Pub Date : 2025-05-15 DOI: 10.1002/jvc2.70056
Ariana Ramírez-Zumbado, Daniel Barquero-Orias, Wendy Vindas-Calderón, Paula Forsythe-Rodríguez
<p>A 22-year-old female patient, known with epilepsy under treatment with chlorpromazine and sodium valproate, with no history of allergies or addictions, presents with a history of 8 months of evolution of a painful, persistent lesion on the sole of the left foot, which had increased in size. Physical examination revealed a deep nodular lesion on the skin of the sole of the left foot with an irregular surface with areas of increased elevation (Figure 1).</p><p>As part of the differential diagnosis, sarcoma versus vascular lesion was initially suggested. Laboratory investigations, blood count, and biochemical profile were performed and reported to be within a normal range. The diagnostic approach began with an imaging study by soft tissue ultrasound, which was reported as possibly a vascular malformation, however, a sarcomatous lesion could be ruled out. Therefore, it was decided to perform an incisional skin biopsy of the lesion.</p><p>The patient was lost for follow-up and could only be re-evaluated 1 year later. Clinically, the lesion persisted and increased in size (Figure 1B). A second skin biopsy and culture for fungi and bacteria were performed (Figure 2).</p><p>Cutaneous botryomycosis is a rare chronic granulomatous infection caused by bacteria. The most frequently implicated germ is <i>S. aureus</i>, however, it can be caused by gram-positive cocci (<i>Streptococci</i> and coagulase-negative <i>Staphylococci</i>), gram-negative bacteria (<i>Pseudomonas aeruginosa</i>, <i>Escherichia coli, Proteus</i> spp, and <i>Serratia</i> spp) and anaerobic bacteria (<i>Peptostreptococci</i> spp and <i>Actinobacilli</i> spp) [<span>1</span>].</p><p>Previous trauma from surgery, burns, disruption of the protective barrier of the skin by microtrauma is often documented. Other identifiable factors are immunocompromise, HIV infection, diabetes mellitus and alcoholism [<span>2, 3</span>]. Botryomycosis can be classified into the cutaneous and the more frequent visceral form. Cutaneous botryomycosis frequently involves exposed parts of the skin, such as the hands, head, and neck or areas of constant trauma such as the feet [<span>2</span>].</p><p>Cutaneous botryomycosis presents characteristically as subcutaneous nodules, ulceration that does not heal with fistulas or verrucous lesions. They are mostly localised lesions, however, deep structures such as bones, muscles, and tendons may be involved by continuity [<span>1, 4</span>]. In addition, any visceral organ [<span>5</span>]. The differential diagnosis of cutaneous botryomycosis includes mycetoma, tuberculosis, actinomycosis, sporotrichosis, and abscesses [<span>6</span>]. The diagnosis is based on culture and histopathology [<span>7</span>]. When botryomycosis is suspected, the bacterial agent must be isolated. Purulent secretions draining from fistulas are useful: Other aetiologic agents can be ruled out using methods such as 10% KOH, polarised light, and different stains such as Ziehl-Neelsen, Fite,
22岁女性患者,已知患有癫痫,正在接受氯丙嗪和丙戊酸钠治疗,无过敏史或成瘾史,表现为8个月的演变史,左脚足底疼痛,持续病变,体积增大。体格检查发现左脚足底皮肤深部结节状病变,表面不规则,凸起区域增加(图1)。作为鉴别诊断的一部分,最初建议将肉瘤与血管病变区分开来。实验室检查、血球计数和生化分析均在正常范围内。诊断方法开始于软组织超声成像研究,据报道可能是血管畸形,然而,肉瘤病变可以排除。因此,决定对病变进行切口皮肤活检。患者失去随访,仅在1年后才能重新评估。在临床上,病变持续存在且体积增大(图1B)。进行第二次皮肤活检和真菌和细菌培养(图2)。皮肤结核菌病是一种罕见的由细菌引起的慢性肉芽肿感染。最常涉及的细菌是金黄色葡萄球菌,然而,它可以由革兰氏阳性球菌(链球菌和凝固酶阴性葡萄球菌)、革兰氏阴性细菌(铜绿假单胞菌、大肠杆菌、变形杆菌和沙雷氏菌)和厌氧菌(胃链球菌和放线菌)引起。以往的创伤,从手术,烧伤,破坏皮肤的保护屏障的微创伤是经常记录。其他可识别的因素包括免疫功能低下、HIV感染、糖尿病和酒精中毒[2,3]。肉孢菌病可分为皮肤型和更常见的内脏型。皮肤孢杆菌病常累及暴露的皮肤部位,如手、头、颈或经常受伤的部位,如脚部。皮肤结核菌病的特征表现为皮下结节,溃疡不能愈合,伴有瘘管或疣状病变。它们大多是局部病变,然而,深层结构,如骨骼、肌肉和肌腱可能被连续性累及[1,4]。此外,任何内脏器官b[5]。皮肤结核菌病的鉴别诊断包括足菌肿、肺结核、放线菌病、孢子菌病和脓肿。诊断是基于培养和组织病理学。当怀疑孢霉病时,必须分离细菌制剂。从瘘管中排出脓性分泌物是有用的:可以使用10% KOH、偏光和不同的染色剂如Ziehl-Neelsen、Fite、亚甲基蓝、Giemsa、Gram、苏木精-伊红和grocotto - gomori甲基胺银等方法排除其他病因。在芽孢菌病中,苏木精-伊红染色和革兰氏染色可识别颗粒内的革兰氏阳性球菌[2,8]。另一方面,孢霉病最常见和最典型的组织病理学特征是Splendore-Hoeppli现象[3],它由嵌入嗜酸性物质透明基质中的细菌组成的典型颗粒(Bollinger颗粒)组成[2,8]。结核菌病的皮肤治疗包括针对致病细菌和特定敏感性的抗菌治疗;有效治疗和治疗时间取决于诸如病变部位、宿主免疫状态、病变深度和邻近解剖结构(肌肉、骨骼和关节)损伤等因素[10]。最常用的抗生素是甲氧苄啶-磺胺甲恶唑、米诺环素、红霉素和头孢菌素。对于厌氧菌和革兰氏阴性菌,应考虑使用克林霉素和甲硝唑。有时,也可以根据临床表现进行手术切除和引流。阿丽亚娜Ramírez-Zumbado:写作-原稿。Daniel Barquero-Orias:写作-评论和编辑,概念化。Wendy Vindas-Calderón:监督。Paula Forsythe-Rodríguez:概念化。本文中的患者已书面同意参与研究,并同意使用其未识别、匿名、汇总的数据及其病例详细信息(包括照片)进行发表。伦理批准:不适用。作者声明无利益冲突。数据可向作者索取。支持本研究结果的数据可向通讯作者索取。由于隐私或道德限制,这些数据不会公开。
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引用次数: 0
Patient and Clinician-Reported Outcomes and Adherence to Calcipotriene/Betamethasone Dipropionate PAD-Cream in Treatment of Scalp Psoriasis in Adults: An Interim Analysis of the PRO-SCALP Study 患者和临床报告的结果和对钙泊三烯/二丙酸倍他米松pad霜治疗成人头皮牛皮癣的依从性:pro -头皮研究的中期分析
IF 0.5 Pub Date : 2025-05-14 DOI: 10.1002/jvc2.70058
Andreas Pinter, Jose Luis López Estebaranz, Anthony Bewley, Jordi Galván, Siva Narayanan, Volker Koscielny, Ismail Kasujee

Background

Effective management of scalp psoriasis needs treatment with high patient preference and treatment satisfaction. Clinical trials show promising results for calcipotriene and betamethasone dipropionate cream based on polyaphron dispersion (PAD) technology (CAL/BDP PAD-cream). However, real-world data are scarce.

Objectives

To evaluate patient- and clinician-reported outcomes and impact of adherence on treatment outcomes of CAL/BDP PAD-cream in adults with mild-to-moderate scalp psoriasis in real-world settings in Europe.

Methods

PRO-SCALP is an ongoing observational, multicentre cohort study, collecting data primarily at baseline and Week 8 (end of the study, EOS). Patient self-assessments included Treatment Satisfaction Questionnaire for Medication Version 9 (TSQM-9), Scalpdex questionnaire, Worst Itch-Numerical Rating Scale (WI-NRS), sleep patterns, personal preferences and adherence to CAL/BDP PAD-cream using a visual analogue scale (VAS). Clinicians' assessments included physician global assessment of scalp (scalp-PGA) and S-mPASI.

Results

Of 152 patients included in this interim analysis, 134 patients (mean age: 48.4 years; 69.4% females) had evaluable outcome data. At EOS, mean (SD) patient satisfaction scores (TSQM-9) were—effectiveness: 76.0 (23.9), convenience of use: 70.2 (21.3), global satisfaction: 76.1 (22.5). At Week 8, 79.0% of patients attained a scalp-PGA score of 0 (clear) or 1 (almost clear), and 71.0% attained scalp-PGA success, defined as a scalp PGA score of 0/1 and ≥ 2-points improvement in scalp-PGA score change from baseline (CFB). CFB of S-mPASI scores, patient-reported symptoms, emotions, functioning and overall Scalpdex scores as well as WI-NRS scores improved significantly (p < 0.0001) at EOS, within both low-adherence (VAS < 80) and high-adherence (VAS: 80−100) groups. Across key outcome measures, CFB of treatment outcomes was found to be better in patients with higher adherence.

Conclusions

Findings of the study indicate high treatment satisfaction, significant improvement in clinical outcomes and patients' quality of life associated with CAL/BDP PAD-cream, especially in patients with higher adherence.

背景头皮牛皮癣的有效治疗需要患者的高度偏好和治疗满意度。临床试验显示,基于多aphron分散体(PAD)技术的钙三烯倍他米松二丙酸乳膏(CAL/BDP PAD-cream)具有良好的效果。然而,真实世界的数据很少。目的:评估欧洲现实环境中CAL/BDP PAD-cream治疗轻至中度头皮牛皮癣成人的患者和临床报告的结果以及依从性对治疗结果的影响。pro -头皮是一项正在进行的观察性多中心队列研究,主要在基线和第8周(研究结束,EOS)收集数据。患者自我评估包括用药治疗满意度问卷第9版(TSQM-9)、Scalpdex问卷、最严重瘙痒数值评定量表(WI-NRS)、睡眠模式、个人偏好以及使用视觉模拟量表(VAS)对CAL/BDP PAD-cream的依从性。临床医生的评估包括医生对头皮的整体评估(头皮- pga)和S-mPASI。在本次中期分析的152例患者中,134例患者(平均年龄48.4岁,69.4%为女性)具有可评估的结局数据。在EOS,平均(SD)患者满意度评分(TSQM-9)为有效性:76.0(23.9),使用便利性:70.2(21.3),总体满意度:76.1(22.5)。在第8周,79.0%的患者获得了0(清晰)或1(几乎清晰)的头皮-PGA评分,71.0%的患者获得了头皮-PGA成功,定义为头皮PGA评分为0/1,头皮-PGA评分较基线(CFB)改善≥2分。在低依从性(VAS < 80)和高依从性(VAS: 80−100)组中,EOS的S-mPASI评分、患者报告的症状、情绪、功能和总体Scalpdex评分以及WI-NRS评分的CFB均显著改善(p < 0.0001)。在关键结果测量中,发现治疗结果的CFB在依从性较高的患者中更好。结论:本研究结果表明,CAL/BDP PAD-cream治疗满意度高,临床结局和患者生活质量显著改善,特别是在依从性较高的患者中。
{"title":"Patient and Clinician-Reported Outcomes and Adherence to Calcipotriene/Betamethasone Dipropionate PAD-Cream in Treatment of Scalp Psoriasis in Adults: An Interim Analysis of the PRO-SCALP Study","authors":"Andreas Pinter,&nbsp;Jose Luis López Estebaranz,&nbsp;Anthony Bewley,&nbsp;Jordi Galván,&nbsp;Siva Narayanan,&nbsp;Volker Koscielny,&nbsp;Ismail Kasujee","doi":"10.1002/jvc2.70058","DOIUrl":"https://doi.org/10.1002/jvc2.70058","url":null,"abstract":"<div>\u0000 \u0000 \u0000 <section>\u0000 \u0000 <h3> Background</h3>\u0000 \u0000 <p>Effective management of scalp psoriasis needs treatment with high patient preference and treatment satisfaction. Clinical trials show promising results for calcipotriene and betamethasone dipropionate cream based on polyaphron dispersion (PAD) technology (CAL/BDP PAD-cream). However, real-world data are scarce.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Objectives</h3>\u0000 \u0000 <p>To evaluate patient- and clinician-reported outcomes and impact of adherence on treatment outcomes of CAL/BDP PAD-cream in adults with mild-to-moderate scalp psoriasis in real-world settings in Europe.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Methods</h3>\u0000 \u0000 <p>PRO-SCALP is an ongoing observational, multicentre cohort study, collecting data primarily at baseline and Week 8 (end of the study, EOS). Patient self-assessments included Treatment Satisfaction Questionnaire for Medication Version 9 (TSQM-9), Scalpdex questionnaire, Worst Itch-Numerical Rating Scale (WI-NRS), sleep patterns, personal preferences and adherence to CAL/BDP PAD-cream using a visual analogue scale (VAS). Clinicians' assessments included physician global assessment of scalp (scalp-PGA) and S-mPASI.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Results</h3>\u0000 \u0000 <p>Of 152 patients included in this interim analysis, 134 patients (mean age: 48.4 years; 69.4% females) had evaluable outcome data. At EOS, mean (SD) patient satisfaction scores (TSQM-9) were—effectiveness: 76.0 (23.9), convenience of use: 70.2 (21.3), global satisfaction: 76.1 (22.5). At Week 8, 79.0% of patients attained a scalp-PGA score of 0 (clear) or 1 (almost clear), and 71.0% attained scalp-PGA success, defined as a scalp PGA score of 0/1 and ≥ 2-points improvement in scalp-PGA score change from baseline (CFB). CFB of S-mPASI scores, patient-reported symptoms, emotions, functioning and overall Scalpdex scores as well as WI-NRS scores improved significantly (<i>p</i> &lt; 0.0001) at EOS, within both low-adherence (VAS &lt; 80) and high-adherence (VAS: 80−100) groups. Across key outcome measures, CFB of treatment outcomes was found to be better in patients with higher adherence.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Conclusions</h3>\u0000 \u0000 <p>Findings of the study indicate high treatment satisfaction, significant improvement in clinical outcomes and patients' quality of life associated with CAL/BDP PAD-cream, especially in patients with higher adherence.</p>\u0000 </section>\u0000 </div>","PeriodicalId":94325,"journal":{"name":"JEADV clinical practice","volume":"4 4","pages":"791-802"},"PeriodicalIF":0.5,"publicationDate":"2025-05-14","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://onlinelibrary.wiley.com/doi/epdf/10.1002/jvc2.70058","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"144923662","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
引用次数: 0
Synchronous Melanoma: A Single-Centre 5-Year Retrospective Study 同步黑色素瘤:一项单中心5年回顾性研究
IF 0.5 Pub Date : 2025-05-14 DOI: 10.1002/jvc2.70064
Ji Fung Yong, Michael O'Connell, Alana Durack, Lyndsey Paul

Background

Synchronous melanoma (SM) is defined as ≥ 2 melanomas diagnosed at the same time, or within 3 months of diagnosing the first melanoma, and occurs rarely.

Objectives

The objective of this study was to review all the cases of SM discussed at the melanoma MDT meeting in our cancer centre over the last 5 years.

Methods

Melanoma MDT lists, histopathology and clinical records were reviewed from July 2018 to July 2023 inclusive, for new SMs. This study includes invasive malignant melanoma (MM), lentigo maligna (LM) and melanoma in situ (MIS).

Results

1082 patients were diagnosed with cutaneous melanomas over the 5-year period. Of these patients, 33 patients (3.05%) with SMs were identified in 21 males and 12 females. Ages ranged from 44 to 93 years. Twenty-four patients (72.7%) had SMs diagnosed at the same time and nine (27.3%) had subsequent melanoma diagnosed within a 3-month period. Risk factors noted included family history of melanoma (6.06%, n = 2), history of immunosuppression (12.1%, n = 4), and history of previous non-melanoma skin cancer (6.06%, n = 2). Of the total number of SMs (n = 68), 26.5% (n = 18) were invasive, 20.6% (n = 14) were LMs and 52.9% (n = 36) were MIS. Most lesions (33.9%, n = 21) were located on the trunk, with 13 (62%) on the back. Sixteen (48.5%) patients had both synchronous in situ lesions, 16 patients had LM/MIS with an invasive melanoma (pathological stage 1a to 4b) and 1 (2.4%) patient had stage 1a with stage 1b melanoma.

Conclusions

To the best of our knowledge, this is the largest retrospective study to date of SM. It highlights the importance of a full skin check especially once a melanoma has been identified, to ensure further melanomas are not missed.

背景:同步黑色素瘤(Synchronous melanoma, SM)定义为同时诊断出≥2个黑色素瘤,或在诊断出第一个黑色素瘤后3个月内发生,罕见。本研究的目的是回顾过去5年来在我们癌症中心的黑色素瘤MDT会议上讨论的所有SM病例。方法回顾2018年7月至2023年7月期间黑色素瘤MDT清单、组织病理学和临床记录,以寻找新的SMs。本研究包括侵袭性恶性黑色素瘤(MM)、恶性lentigo (LM)和原位黑色素瘤(MIS)。结果5年内确诊皮肤黑色素瘤1082例。其中男性21例,女性12例,33例(3.05%)为SMs。年龄从44岁到93岁不等。24名患者(72.7%)同时诊断出SMs, 9名患者(27.3%)在3个月内诊断出黑色素瘤。危险因素包括黑色素瘤家族史(6.06%,n = 2)、免疫抑制史(12.1%,n = 4)和既往非黑色素瘤皮肤癌史(6.06%,n = 2)。在68例SMs中,侵袭性占26.5% (n = 18), LMs占20.6% (n = 14), MIS占52.9% (n = 36)。大多数病变(33.9%,n = 21)位于躯干,13例(62%)位于背部。16例(48.5%)患者同时存在原位病变,16例LM/MIS伴侵袭性黑色素瘤(病理阶段1a至4b), 1例(2.4%)患者1a期伴1b期黑色素瘤。结论:据我们所知,这是迄今为止最大的SM回顾性研究。它强调了全面皮肤检查的重要性,特别是一旦发现黑色素瘤,以确保不会遗漏进一步的黑色素瘤。
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引用次数: 0
Mycosis Fungoides in Paediatric Patients: A Real-Life Retrospective Study 儿童真菌病患者:一项真实的回顾性研究
IF 0.5 Pub Date : 2025-05-14 DOI: 10.1002/jvc2.70059
Mariana de la Vega, María Antonieta Domínguez Gómez, Martha Alejandra Morales-Sánchez

Background

Mycosis fungoides (MF) is the most common type of cutaneous T cell lymphoma, and less than 5% of cases occur in paediatric patients. No treatment standardized guidelines exist for paediatric population, and evidence comes from small retrospective studies. No studies in Mexican children were identified.

Objectives

To describe epidemiological data, to determine treatment response and factors associated with remission or relapse, and to examine the impact of diagnosis delay in complete remission.

Methods

We retrospectively analysed records of all patients aged 0−18 years diagnosed with MF who were treated in Centro Dermatológico Pascua, between January 2007 and July 2023.

Results

One hundred and twenty-three patients were included. The median age at diagnosis was 12 years. All patients presented with early clinical stages (IA/IB). Hypopigmented phenotype was present in 70.7%. Phototherapy was the most frequently indicated treatment (89.4%). Complete remission was achieved by 35.8% in a median of 16.54 ± 14.74 months. Involved body surface area (BSA), duration of disease and phototherapy were inversely associated with complete remission. The median time to follow-up was 19 months (range 40 months), with an overall survival of 100%, and no disease progression. Relapse was present in 15.44%, and associated predictors were skin phototype and clinical variants different from hypopigmented. BSA and the duration of the disease were negatively associated. Institutional diagnosis delay had a median of 3 months (range 0.8−10.7 months), with no statistically significant impact in complete remission.

Conclusions

To our knowledge, this study represents the largest paediatric cohort worldwide, and the first to examine the Mexican population. Phototherapy is the most prescribed treatment modality in our centre, with acceptable remission rates. Our study confirms a favourable prognosis of MF in children. Prospective studies are needed to better characterize the epidemiology and clinical course of the disease, to determine treatment efficacy and to identify prognostic factors.

蕈样真菌病(MF)是最常见的皮肤T细胞淋巴瘤类型,在儿科患者中发生的病例不到5%。目前尚无针对儿科人群的标准化治疗指南,证据来自小型回顾性研究。没有发现对墨西哥儿童的研究。目的描述流行病学资料,确定治疗反应和与缓解或复发相关的因素,并检查诊断延迟对完全缓解的影响。方法回顾性分析2007年1月至2023年7月期间在Dermatológico Pascua中心接受治疗的所有年龄为0 - 18岁的MF患者的记录。结果共纳入123例患者。诊断时的中位年龄为12岁。所有患者均表现为早期临床阶段(IA/IB)。70.7%为低色素表型。光疗是最常见的治疗方法(89.4%)。完全缓解率为35.8%,中位时间为16.54±14.74个月。受累体表面积(BSA)、疾病持续时间和光疗与完全缓解呈负相关。中位随访时间为19个月(范围40个月),总生存率为100%,无疾病进展。复发率为15.44%,相关预测因子为皮肤光型和不同于低色素沉着的临床变异。BSA与病程呈负相关。机构诊断延迟的中位数为3个月(0.8 - 10.7个月),对完全缓解没有统计学意义上的显著影响。据我们所知,这项研究是世界上最大的儿科队列研究,也是首次对墨西哥人口进行研究。光疗是我们中心最常用的治疗方式,缓解率可接受。我们的研究证实儿童MF预后良好。需要进行前瞻性研究,以更好地描述该病的流行病学和临床病程,确定治疗效果并确定预后因素。
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引用次数: 0
Genital Psoriasis: Shining Light on This Hidden Disease 生殖器牛皮癣:照亮这个隐藏的疾病
IF 0.5 Pub Date : 2025-05-14 DOI: 10.1002/jvc2.70043
Jennifer Cather, Melodie Young, Muriel Boreham, Shehla Admani, Tina Bhutani, Erin Foster, Richard Fried, Melinda Gooderham, Jeannette Jakus, Sandra Johnson, Ryoichi Kamide, John Koo, Tiffany Mayo, Michael Payette, Caitriona Ryan, Lucinda Whitney, Krista Bohnert, Melissa Seal, Patrick Burnett, Diane Hanna

Background

Psoriasis occurring on the skin of the genital and perigenital regions, including the inguinal creases, vulva, penis, scrotum, perianal area, and the intergluteal cleft, has specific diagnostic and treatment requirements due to the sensitivity and private nature of these areas.

Objectives

A multidisciplinary group of 13 US-based clinicians who are experts in the management of genital psoriasis, the Genital Psoriasis Wellness Consortium, convened to discuss the impact of genital psoriasis on patients focusing on three main domains: (1) physical diagnosis and patient conversations, (2) impact on patient quality of life/interpersonal relationships, and (3) treatment decisions.

Methods

A PubMed literature search was conducted, and the Consortium members used the results to formulate their consensus statements using a modified Delphi process, including a nominal group technique. The process included two rounds of virtual subcommittee meetings based on the three domains, followed by surveys to obtain anonymous feedback, and concluded with a final meeting to discuss and finalize the language of the consensus recommendations across all three domains. Three additional psoriasis experts provided feedback on these consensus statements from Canadian, European, and Asian perspectives.

Results

Herein, we report our 14 consensus statements and a summary of the supporting data.

Conclusions

These consensus statements are meant as a practical resource for clinicians to ensure that symptoms of genital psoriasis are not overlooked. We hope to continue to add to these statements as additional clinical data become available.

背景银屑病发生在生殖和先天性区域的皮肤,包括腹股沟皱襞、外阴、阴茎、阴囊、肛周区域和臀间裂,由于这些区域的敏感性和私密性,具有特定的诊断和治疗要求。由13名美国生殖器银屑病管理专家组成的多学科小组——生殖器银屑病健康联盟,召开会议讨论生殖器银屑病对患者的影响,重点关注三个主要领域:(1)物理诊断和患者对话;(2)对患者生活质量/人际关系的影响;(3)治疗决策。方法进行PubMed文献检索,联盟成员使用改进的德尔菲过程(包括名义小组技术),利用结果制定他们的共识声明。该过程包括基于这三个领域的两轮虚拟小组委员会会议,随后进行调查以获得匿名反馈,最后举行最后一次会议,讨论并最终确定所有三个领域的协商一致建议的语言。另外三位牛皮癣专家从加拿大、欧洲和亚洲的角度对这些共识声明提供了反馈。在此,我们报告了我们的14个共识声明和支持数据的摘要。结论这些共识声明是临床医生确保生殖器牛皮癣症状不被忽视的实用资源。随着更多临床数据的出现,我们希望继续增加这些声明。
{"title":"Genital Psoriasis: Shining Light on This Hidden Disease","authors":"Jennifer Cather,&nbsp;Melodie Young,&nbsp;Muriel Boreham,&nbsp;Shehla Admani,&nbsp;Tina Bhutani,&nbsp;Erin Foster,&nbsp;Richard Fried,&nbsp;Melinda Gooderham,&nbsp;Jeannette Jakus,&nbsp;Sandra Johnson,&nbsp;Ryoichi Kamide,&nbsp;John Koo,&nbsp;Tiffany Mayo,&nbsp;Michael Payette,&nbsp;Caitriona Ryan,&nbsp;Lucinda Whitney,&nbsp;Krista Bohnert,&nbsp;Melissa Seal,&nbsp;Patrick Burnett,&nbsp;Diane Hanna","doi":"10.1002/jvc2.70043","DOIUrl":"https://doi.org/10.1002/jvc2.70043","url":null,"abstract":"<div>\u0000 \u0000 \u0000 <section>\u0000 \u0000 <h3> Background</h3>\u0000 \u0000 <p>Psoriasis occurring on the skin of the genital and perigenital regions, including the inguinal creases, vulva, penis, scrotum, perianal area, and the intergluteal cleft, has specific diagnostic and treatment requirements due to the sensitivity and private nature of these areas.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Objectives</h3>\u0000 \u0000 <p>A multidisciplinary group of 13 US-based clinicians who are experts in the management of genital psoriasis, the Genital Psoriasis Wellness Consortium, convened to discuss the impact of genital psoriasis on patients focusing on three main domains: (1) physical diagnosis and patient conversations, (2) impact on patient quality of life/interpersonal relationships, and (3) treatment decisions.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Methods</h3>\u0000 \u0000 <p>A PubMed literature search was conducted, and the Consortium members used the results to formulate their consensus statements using a modified Delphi process, including a nominal group technique. The process included two rounds of virtual subcommittee meetings based on the three domains, followed by surveys to obtain anonymous feedback, and concluded with a final meeting to discuss and finalize the language of the consensus recommendations across all three domains. Three additional psoriasis experts provided feedback on these consensus statements from Canadian, European, and Asian perspectives.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Results</h3>\u0000 \u0000 <p>Herein, we report our 14 consensus statements and a summary of the supporting data.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Conclusions</h3>\u0000 \u0000 <p>These consensus statements are meant as a practical resource for clinicians to ensure that symptoms of genital psoriasis are not overlooked. We hope to continue to add to these statements as additional clinical data become available.</p>\u0000 </section>\u0000 </div>","PeriodicalId":94325,"journal":{"name":"JEADV clinical practice","volume":"4 4","pages":"719-731"},"PeriodicalIF":0.5,"publicationDate":"2025-05-14","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://onlinelibrary.wiley.com/doi/epdf/10.1002/jvc2.70043","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"144923661","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
引用次数: 0
Association of Psychiatric Comorbidities With Chronic Urticaria: A Nested Case-Control Study in the All of Us Research Program 精神合并症与慢性荨麻疹的关联:我们所有人研究项目的巢式病例对照研究
IF 0.5 Pub Date : 2025-05-14 DOI: 10.1002/jvc2.70063
Nana A. Adjei-Frimpong, Julian Cortes, Savannah K. Fakhouri, Francesco Delacqua, Reid Oldenburg

Background

Chronic urticaria (CU) is characterised by recurring itchy hives lasting more than 6 weeks, with or without angioedema. Although CU patients are known to have an increased likelihood of psychiatric comorbidities, research exploring this connection in diverse populations remains limited.

Objectives

This study investigates the association between CU and psychiatric disorders using the All of Us (AoU) database, a nationwide initiative designed to enhance research in underrepresented populations.

Methods

We conducted a nested case-control study among US adults in the AoU program from May 6, 2018 to February 26, 2025. SNOMED codes were used to identify CU cases that were then matched 4:1 to controls by age, sex, ethnicity, and smoking status. Psychiatric comorbidities were assessed using logistic regression models adjusted for hypothyroidism, systemic lupus erythematosus, and rheumatoid arthritis.

Results

We identified 1171 CU cases and 4684 matched controls. CU was significantly associated with increased odds of ADHD (odds ratio [OR], 3.61; 95% confidence interval [CI], 2.62–4.96), anxiety (OR, 3.48; 95% CI, 3.03–3.99), depression (OR, 3.26; 95% CI, 2.84–3.75), dysthymia (OR, 3.67; 95% CI, 2.89–4.66), insomnia (OR, 3.27; 95% CI, 2.77–3.86), psychological stress (OR, 3.92; 95% CI, 3.09–4.96), PTSD (OR, 3.25; 95% CI, 2.53–4.17), and substance use disorder (OR, 2.13; 95% CI, 1.74–2.62).

Conclusions

These findings highlight the psychiatric burden associated with CU and demonstrates the importance of routine psychiatric screenings for CU patients to allow early intervention. Prospective studies investigating additional psychiatric disorders and underlying mechanisms will help clarify meaningful associations and guide appropriate psychiatric screening and management.

背景:慢性荨麻疹(CU)的特征是持续6周以上的反复发痒的荨麻疹,伴或不伴血管性水肿。虽然已知CU患者有精神合并症的可能性增加,但在不同人群中探索这种联系的研究仍然有限。本研究利用全美(AoU)数据库调查CU与精神疾病之间的关系,该数据库是一个全国性的倡议,旨在加强对代表性不足人群的研究。方法:我们于2018年5月6日至2025年2月26日在AoU项目的美国成年人中进行了一项巢式病例对照研究。SNOMED编码用于识别CU病例,然后按年龄、性别、种族和吸烟状况将其与对照进行4:1匹配。采用经甲状腺功能减退、系统性红斑狼疮和类风湿关节炎校正的logistic回归模型评估精神疾病合并症。结果共发现1171例CU病例和4684例对照。CU与ADHD(比值比[OR], 3.61; 95%可信区间[CI], 2.62-4.96)、焦虑(OR, 3.48; 95% CI, 3.03-3.99)、抑郁(OR, 3.26; 95% CI, 2.84-3.75)、心境不良(OR, 3.67; 95% CI, 2.89-4.66)、失眠(OR, 3.27; 95% CI, 2.77-3.86)、心理压力(OR, 3.92; 95% CI, 3.09-4.96)、PTSD (OR, 3.25; 95% CI, 2.53-4.17)和物质使用障碍(OR, 2.13;95% ci, 1.74-2.62)。结论:这些发现强调了与CU相关的精神负担,并证明了对CU患者进行常规精神筛查以进行早期干预的重要性。调查其他精神疾病及其潜在机制的前瞻性研究将有助于澄清有意义的关联,并指导适当的精神筛查和管理。
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引用次数: 0
The Association of Psoriasis With Sleep Disorders in a Diverse National Cohort 不同国家队列中银屑病与睡眠障碍的关联
IF 0.5 Pub Date : 2025-05-13 DOI: 10.1002/jvc2.70022
Michael J. Diaz, Zaim Haq, Jasmine T. Tran, Parsa Abdi, Nicole Natarelli, Wilson Liao, Marjorie E. Montanez-Wiscovich

Background

Higher prevalence of sleep disorders is seen in persons with psoriasis (PsO). However, the extent to which sleep conditions are linked to PsO severity, particularly across diverse populations, remains unknown. Bridging this knowledge gap is vital for developing comprehensive, equitable and personalized care strategies.

Objectives

We aimed to quantify the extent to which psoriasis severity correlates with the risk of developing specific sleep disorders, and to identify how these associations vary by racial/ethnic group, using robust covariate adjustments.

Methods

Health records for 7743 adults with psoriasis were obtained from the All of Us sample—an NIH database initiative that oversamples underrepresented populations. Cases were selectively matched 1:4 to age-, sex-, and race/ethnicity-matched controls, and differences were interrogated by multivariable regression.

Results

Mild PsO was significantly associated with restless leg syndrome, insomnia and obstructive sleep apnoea after adjusting for sociodemographic variables and comorbidities. Moderate-to-severe PsO demonstrated greater magnitudes of association. We additionally observed a magnified sleep disorder risk in non-White patients, particularly for insomnia and OSA.

Conclusions

Both mild and moderate-to-severe psoriasis is significantly associated with an increased risk of sleep disorders, with notable variations across different racial/ethnic groups.

背景:银屑病(PsO)患者的睡眠障碍患病率较高。然而,睡眠状况与PsO严重程度的关联程度,特别是在不同人群中,仍然未知。弥合这一知识差距对于制定全面、公平和个性化的护理战略至关重要。我们旨在量化牛皮癣严重程度与发生特定睡眠障碍风险的相关程度,并通过稳健协变量调整确定这些关联如何随种族/族裔群体而变化。方法从“我们所有人”样本中获得7743名成年牛皮癣患者的健康记录,这是一个NIH数据库倡议,样本过多,代表性不足。将病例选择性地与年龄、性别和种族/民族匹配的对照组进行1:4匹配,并通过多变量回归分析差异。结果在调整社会人口学变量和合并症后,轻度PsO与不宁腿综合征、失眠和阻塞性睡眠呼吸暂停显著相关。中度至重度PsO表现出更大程度的关联。我们还观察到非白人患者睡眠障碍风险增加,特别是失眠和阻塞性睡眠呼吸暂停。结论:轻度和中度至重度牛皮癣均与睡眠障碍风险增加显著相关,且在不同种族/族裔群体中存在显著差异。
{"title":"The Association of Psoriasis With Sleep Disorders in a Diverse National Cohort","authors":"Michael J. Diaz,&nbsp;Zaim Haq,&nbsp;Jasmine T. Tran,&nbsp;Parsa Abdi,&nbsp;Nicole Natarelli,&nbsp;Wilson Liao,&nbsp;Marjorie E. Montanez-Wiscovich","doi":"10.1002/jvc2.70022","DOIUrl":"https://doi.org/10.1002/jvc2.70022","url":null,"abstract":"<div>\u0000 \u0000 \u0000 <section>\u0000 \u0000 <h3> Background</h3>\u0000 \u0000 <p>Higher prevalence of sleep disorders is seen in persons with psoriasis (PsO). However, the extent to which sleep conditions are linked to PsO severity, particularly across diverse populations, remains unknown. Bridging this knowledge gap is vital for developing comprehensive, equitable and personalized care strategies.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Objectives</h3>\u0000 \u0000 <p>We aimed to quantify the extent to which psoriasis severity correlates with the risk of developing specific sleep disorders, and to identify how these associations vary by racial/ethnic group, using robust covariate adjustments.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Methods</h3>\u0000 \u0000 <p>Health records for 7743 adults with psoriasis were obtained from the All of Us sample—an NIH database initiative that oversamples underrepresented populations. Cases were selectively matched 1:4 to age-, sex-, and race/ethnicity-matched controls, and differences were interrogated by multivariable regression.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Results</h3>\u0000 \u0000 <p>Mild PsO was significantly associated with restless leg syndrome, insomnia and obstructive sleep apnoea after adjusting for sociodemographic variables and comorbidities. Moderate-to-severe PsO demonstrated greater magnitudes of association. We additionally observed a magnified sleep disorder risk in non-White patients, particularly for insomnia and OSA.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Conclusions</h3>\u0000 \u0000 <p>Both mild and moderate-to-severe psoriasis is significantly associated with an increased risk of sleep disorders, with notable variations across different racial/ethnic groups.</p>\u0000 </section>\u0000 </div>","PeriodicalId":94325,"journal":{"name":"JEADV clinical practice","volume":"4 4","pages":"821-825"},"PeriodicalIF":0.5,"publicationDate":"2025-05-13","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://onlinelibrary.wiley.com/doi/epdf/10.1002/jvc2.70022","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"144923726","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
引用次数: 0
Treatment Survival in Patients With Hidradenitis Suppurativa 化脓性汗腺炎患者的治疗生存率
IF 0.5 Pub Date : 2025-05-05 DOI: 10.1002/jvc2.70027
Lea Schulte-Oestrich, Simone Cazzaniga, Robert E. Hunger, S. Morteza Seyed Jafari

Background

Despite the existence of therapeutic approaches, effective management of hidradenitis suppurativa (HS) remains elusive in many cases. In addition, most of the current studies focus on treatment response in a cross-sectional analysis of patients, and therefore a proper study analysing different treatment strategies longitudinally in each individual patient is still lacking.

Objectives

The current study aimed to provide insight into HS patients treated with different treatment strategies and to clarify the reasons for switching or discontinuing each treatment group.

Methods

The single-center, retrospective study collected information on patient characteristics and management strategies, focusing on different treatment groups and reasons for discontinuation or switching.

Results

Ninety-eight patients were included in the study (53.1% males, median age 38.5 years). During the study period, 98.0% of patients had at least one prescription of topical therapy, particularly non-antibiotics disinfectants. 92.9% of patients also received a prescription for systemic antibiotics, especially tetracyclines (86.7%). 26.5% were prescribed biologic therapies, mainly TNF-alpha blockers (25.5%), with a median time to start treatment of 0.9 years. Non-biologic systemic therapies (relative risk [RR]: 1.54; 95% confidence interval [CI] 1.28–1.85) and systemic antibiotics (RR: 1.97; 95% CI: 1.56–2.48) showed a moderate-to-high risk of discontinuation. The most frequent switching patterns were from topicals plus systemic antibiotics to the same combination plus other therapies (11.2%), including surgery and laser, to topical treatment alone (8.5%), or to topicals plus biologics (4.5%).

Conclusions

Standard care management of HS requires a personalized, multifaceted approach, typically involving a combination of local and systemic treatments, with antibiotics often used first. When antibiotics and other systemic agents are ineffective, biologics may be used alone or with antibiotics; delaying their use can miss the chance to prevent disease progression and the possible ‘window of opportunity’ in the treatment of HS.

背景尽管存在治疗方法,但在许多病例中,化脓性汗腺炎(HS)的有效治疗仍然难以捉摸。此外,目前的研究大多集中在对患者的横断面分析中的治疗反应,因此仍然缺乏对每个患者的不同治疗策略进行纵向分析的适当研究。目的本研究旨在深入了解不同治疗策略治疗的HS患者,并澄清切换或停止每个治疗组的原因。方法采用单中心回顾性研究,收集患者特征和管理策略信息,重点关注不同治疗组和停药或转药的原因。结果98例患者纳入研究,其中男性53.1%,中位年龄38.5岁。在研究期间,98.0%的患者至少使用过一种局部治疗处方,特别是非抗生素消毒剂。92.9%的患者还接受过全身性抗生素处方,尤其是四环素类药物(86.7%)。26.5%的患者接受生物治疗,主要是tnf - α受体阻滞剂(25.5%),开始治疗的中位时间为0.9年。非生物全身性治疗(相对危险度[RR]: 1.54; 95%可信区间[CI] 1.28-1.85)和全身性抗生素(相对危险度:1.97;95%可信区间:1.56-2.48)显示出中度至高度的停药风险。最常见的转换模式是从局部药物加全身抗生素到相同的组合加其他治疗(11.2%),包括手术和激光,再到单独局部治疗(8.5%),或局部药物加生物制剂(4.5%)。HS的标准护理管理需要个性化的、多方面的方法,通常包括局部和全身治疗相结合,通常首先使用抗生素。当抗生素和其他全身药物无效时,生物制剂可单独使用或与抗生素联合使用;推迟它们的使用可能会错过预防疾病进展的机会和治疗HS的可能的“机会之窗”。
{"title":"Treatment Survival in Patients With Hidradenitis Suppurativa","authors":"Lea Schulte-Oestrich,&nbsp;Simone Cazzaniga,&nbsp;Robert E. Hunger,&nbsp;S. Morteza Seyed Jafari","doi":"10.1002/jvc2.70027","DOIUrl":"https://doi.org/10.1002/jvc2.70027","url":null,"abstract":"<div>\u0000 \u0000 \u0000 <section>\u0000 \u0000 <h3> Background</h3>\u0000 \u0000 <p>Despite the existence of therapeutic approaches, effective management of hidradenitis suppurativa (HS) remains elusive in many cases. In addition, most of the current studies focus on treatment response in a cross-sectional analysis of patients, and therefore a proper study analysing different treatment strategies longitudinally in each individual patient is still lacking.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Objectives</h3>\u0000 \u0000 <p>The current study aimed to provide insight into HS patients treated with different treatment strategies and to clarify the reasons for switching or discontinuing each treatment group.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Methods</h3>\u0000 \u0000 <p>The single-center, retrospective study collected information on patient characteristics and management strategies, focusing on different treatment groups and reasons for discontinuation or switching.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Results</h3>\u0000 \u0000 <p>Ninety-eight patients were included in the study (53.1% males, median age 38.5 years). During the study period, 98.0% of patients had at least one prescription of topical therapy, particularly non-antibiotics disinfectants. 92.9% of patients also received a prescription for systemic antibiotics, especially tetracyclines (86.7%). 26.5% were prescribed biologic therapies, mainly TNF-alpha blockers (25.5%), with a median time to start treatment of 0.9 years. Non-biologic systemic therapies (relative risk [RR]: 1.54; 95% confidence interval [CI] 1.28–1.85) and systemic antibiotics (RR: 1.97; 95% CI: 1.56–2.48) showed a moderate-to-high risk of discontinuation. The most frequent switching patterns were from topicals plus systemic antibiotics to the same combination plus other therapies (11.2%), including surgery and laser, to topical treatment alone (8.5%), or to topicals plus biologics (4.5%).</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Conclusions</h3>\u0000 \u0000 <p>Standard care management of HS requires a personalized, multifaceted approach, typically involving a combination of local and systemic treatments, with antibiotics often used first. When antibiotics and other systemic agents are ineffective, biologics may be used alone or with antibiotics; delaying their use can miss the chance to prevent disease progression and the possible ‘window of opportunity’ in the treatment of HS.</p>\u0000 </section>\u0000 </div>","PeriodicalId":94325,"journal":{"name":"JEADV clinical practice","volume":"4 4","pages":"751-758"},"PeriodicalIF":0.5,"publicationDate":"2025-05-05","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://onlinelibrary.wiley.com/doi/epdf/10.1002/jvc2.70027","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"144923435","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
引用次数: 0
Defining Core Concepts for Health-Related Quality of Life for Patients With Mycosis Fungoides and Sézary Syndrome: A Systematic Literature Review 定义蕈样真菌病和ssamzary综合征患者健康相关生活质量的核心概念:系统文献综述
IF 0.5 Pub Date : 2025-05-05 DOI: 10.1002/jvc2.70039
Christina Asare, Jennifer Chen, Pragna Naidoo, Caroline Raymundo, Marianne Tawa, Nilufer Khan, Elise Olsen, Rosanne Ottevanger, Julia Scarisbrick, Susan Thornton, Ellen J. Kim, Cecilia Larocca, Michi M. Shinohara, International Dermatology Outcomes Measures (IDEOM) CTCL Workgroup

Background

There is no consensus on how best to assess the impact of living with mycosis fungoides (MF)/Sézary syndrome (SS) on a patient's quality of life.

Objectives

To identify all potential concepts that describe disease severity or contribute to health-related quality of life (HRQOL) from patients with MF/SS and their care partners.

Methods

A systemic literature review of articles and meeting abstracts published between 2000 and 2022 was conducted. Inclusion criteria were any study that included MF/SS patients or care partners and reported any concept that patients or care partners could use to characterize any aspect of MF/SS. Thematic analysis was completed using NVIVO.

Results

One hundred and three articles/abstracts met inclusion criteria. Within these studies, 30 existing instruments were utilized. Concepts within these existing instruments fell into the following health component categories: Physical-functional well-being (PF; 50.4%), mental health/emotional well-being (MHE; 26.6%), social well-being (S; 18.3%) or other (O; 4.7%). The most frequently measured concepts by existing instruments were physical mobility (7.5%), itching (7.2%), pain (7.0%) and fatigue (5.2%). One study conducted content validity analysis for an included instrument. Distinct concepts were identified from qualitative studies and novel instruments, and included hair loss, nail changes, cracking/fissuring of the skin, inability to regulate temperature, difficulty with wound dressings, skin infection, skin oozing/weeping/bleeding, pigmentary changes, treatment burden and treatment satisfaction, and care partners' specific concepts. One study conducted content validity analysis for an included instrument.

Conclusions

Numerous PROMs have been used to assess HRQOL for patients with MF/SS, with very little content validity analysis. Several concepts identified from qualitative studies and newly developed or piloted instruments are not represented in existing PROMs. Future efforts will include prioritizing candidate core concepts by stakeholders to develop a core domain set that captures the most relevant aspects of MF/SS that impact HRQOL.

关于如何最好地评估真菌样霉菌病(MF)/ ssamzary综合征(SS)对患者生活质量的影响尚无共识。目的确定MF/SS患者及其护理伙伴描述疾病严重程度或影响健康相关生活质量(HRQOL)的所有潜在概念。方法对2000 ~ 2022年发表的论文和会议摘要进行系统的文献回顾。纳入标准是包括MF/SS患者或护理伙伴的任何研究,并报告患者或护理伙伴可用于表征MF/SS任何方面的任何概念。使用NVIVO完成专题分析。结果103篇文章/摘要符合纳入标准。在这些研究中,使用了30种现有的工具。这些现有工具中的概念分为以下健康成分类别:身体功能健康(PF; 50.4%),精神健康/情感健康(MHE; 26.6%),社会健康(S; 18.3%)或其他(O; 4.7%)。现有仪器最常测量的概念是身体活动能力(7.5%)、瘙痒(7.2%)、疼痛(7.0%)和疲劳(5.2%)。一项研究对纳入的工具进行了内容效度分析。从定性研究和新仪器中确定了不同的概念,包括脱发、指甲变化、皮肤开裂/裂裂、无法调节温度、伤口敷料困难、皮肤感染、皮肤渗出/流泪/出血、色素改变、治疗负担和治疗满意度以及护理伙伴的具体概念。一项研究对纳入的工具进行了内容效度分析。结论大量的PROMs被用于评估MF/SS患者的HRQOL,但很少有内容效度分析。从定性研究和新开发或试用的仪器中确定的一些概念在现有的prom中没有体现。未来的工作将包括由利益相关者对候选核心概念进行优先级排序,以开发一个核心领域集,以捕获影响HRQOL的MF/SS最相关的方面。
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JEADV clinical practice
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