了解大疱性表皮松解症患者的需求和经济挑战：来自捐赠请求的见解。

IF 1.2 4区医学 Q3 DERMATOLOGY

Pediatric Dermatology Pub Date : 2025-09-19 DOI:10.1111/pde.70047

Elika D Javaheri, Vivian C Iloabuchi, Elizabeth Dupuy, Nessa Aghazadeh Mohandesi

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引用次数: 0

摘要

大疱性表皮松解症（EB）是一种罕见的遗传性疾病，需要密集和昂贵的护理，通常在婴儿时期被诊断出来，当时家庭还没有准备好承担经济负担。我们分析了160个美国。为活着的EB患者开展众筹活动，提取人口统计数据和财务需求。33.8%的患者要求为伤口护理用品提供财政支持，36.9%的患者要求支持差旅费，9.4%的患者要求提供特殊服装或床上用品。这些发现突出了eb相关护理的持续的、未解决的财务需求。

本文章由计算机程序翻译，如有差异，请以英文原文为准。

查看原文本刊更多论文

Understanding the Needs and Financial Challenges of Patients With Epidermolysis Bullosa: Insights From Donation Requests.

Epidermolysis bullosa (EB) is a rare genetic disorder requiring intensive and costly care, often diagnosed in infancy when families are unprepared for the financial burden. We analyzed 160 U.S.-based crowdfunding campaigns for living EB patients, extracting data on demographics and financial needs. 33.8% of patients requested financial support for wound care supplies, 36.9% of patients requested support for travel costs, and 9.4% of patients requested support with special clothing or bedding. These findings highlight persistent, unresolved financial needs for EB-related care.

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来源期刊

Pediatric Dermatology 医学-皮肤病学

CiteScore

3.20

自引率

6.70%

发文量

269

审稿时长

1 months

期刊介绍： Pediatric Dermatology answers the need for new ideas and strategies for today''s pediatrician or dermatologist. As a teaching vehicle, the Journal is still unsurpassed and it will continue to present the latest on topics such as hemangiomas, atopic dermatitis, rare and unusual presentations of childhood diseases, neonatal medicine, and therapeutic advances. As important progress is made in any area involving infants and children, Pediatric Dermatology is there to publish the findings.