Department of Dermatology, Faculty of Medicine Siriraj Hospital, Mahidol University, Bangkok, Thailand.
College of Interdisciplinary Studies, Thammasat University, Bangkok, Thailand.
J Cosmet Dermatol. 2021 Jul;20(7):2203-2210. doi: 10.1111/jocd.14199. Epub 2021 May 18.
Port-wine stain (PWS) is a congenital malformation that does not resolve spontaneously and can lead to social and self-stigma. However, little is known about how PWS affects the patients' quality of life (QoL) and psychosocial well-being. In this article, we examine the existing empirical evidence on self-stigma caused by PWS.
A systematic review was done using MEDLINE, PubMed, Embase, and Cochrane databases on January 15, 2021 to retrieve all case reports, cohort studies, and clinical trials written in English. The keywords used in this literature search included port-wine stain, quality of life, self-stigma, and social stigma.
From the 74 initial records, eight articles were quantitative studies that assessed the QoL and self-stigma experienced by PWS patients. With regard to perceived stigma or the patients' understanding of how others think and act toward them, we found that the parents of children with facial PWS tend to have more perceived stigma than the children. For anticipated stigma or expectations of future stigma, young patients with PWS have less or no concern about their skin conditions. In terms of enacted stigma or experiences with discriminatory acts, there were significant differences in the QoL score between patients with facial PWS and those with non-facial PWS.
This study suggests that self-stigma caused by PWS affects young patients and their parents. The parents in particular tend to suffer more than their children from perceived and anticipated stigma. Psychological support and early treatment can improve the livelihoods of young patients and their parents.
葡萄酒色斑（PWS）是一种先天性畸形，不会自行消退，可能导致社会和自我污名化。然而，人们对 PWS 如何影响患者的生活质量（QoL）和心理社会健康知之甚少。在本文中，我们研究了由 PWS 引起的自我污名化的现有实证证据。
我们于 2021 年 1 月 15 日使用 MEDLINE、PubMed、Embase 和 Cochrane 数据库进行了系统综述，以检索所有用英文撰写的病例报告、队列研究和临床试验。本次文献检索使用的关键词包括葡萄酒色斑、生活质量、自我污名化和社会污名化。
从最初的 74 条记录中，有 8 篇定量研究评估了 PWS 患者的生活质量和自我污名化。关于感知污名或患者对他人对他们的看法和行为的理解，我们发现面部 PWS 儿童的父母往往比孩子有更多的感知污名。对于预期污名或对未来污名的期望，患有 PWS 的年轻患者对他们的皮肤状况关注较少或没有关注。在表现污名或歧视行为方面，面部 PWS 患者和非面部 PWS 患者的生活质量评分存在显著差异。
本研究表明，PWS 引起的自我污名化会影响年轻患者及其父母。特别是父母往往比孩子更容易受到感知和预期污名的影响。心理支持和早期治疗可以改善年轻患者及其父母的生活。
