Self‐stigma and psychosocial burden of patients with port‐wine stain: A systematic review and meta‐analysis

Abstract

Port-wine stain (PWS) is a congenital capillary malformation commonly found in the head and neck. With an incidence of 0.3%-0.9% in the newborns, this pathological condition affects males and females equally. 1,2 PWS lesions first appear as pink or red macules that do not undergo spontaneous involution and may progressively darken to reddish purple. 3 The lesions grow proportionately with age and can lead to the formation of papules and nodules or may develop into hypertrophic PWS. 4 Aside from cosmetic disfigurement, PWS hypertrophy may also impair sight, speech, nasal breathing, and hearing. 5 PWS is also associated with two uncommon syndromes: Sturge-Weber syndrome (SWS) and Klippel-Trenaunay syndrome (KTS). 6 SWS is a neurocutaneous disorder characterized by PWS usually affecting one hemiface along one or more trigeminal

A core outcome domain set for clinical research on capillary malformations (the COSCAM project): an e-Delphi process and consensus meeting

“…CMs are well known to affect QoL due to their disfiguring appearance, specifically when located in the head and neck region 7,34 . Wanitphakdeedecha et al (2021) found a statistically significant difference between QoL scores of patients with a facial CM and patients without a facial CM or with no CM 35 . They concluded that patients with facial CMs face discrimination more likely than patients with non-facial CMs.…”

“…7,34 Wanitphakdeedecha et al found a statistically significant difference between quality-of-life scores of patients with a facial CM and patients without a facial CM or with no CM. 35 They concluded that patients with facial CMs are more likely to encounter discrimination than patients with nonfacial CMs. In addition, 'recurrence' was ranked as a crucial outcome subdomain.…”

Willingness to Pay and Time Trade-off in Thai Patients with Port-Wine Stains

“…Our previous study revealed young children had no or less concern about PWS than adolescents and young adults. 5 Adolescents with PWS frequently experience rejection, exclusion, and devaluation in their daily life. 24 Jiang et al 15 reported that children’s QoL was more affected as they got older or the color of the lesions darkened.…”

“… 3 Patients primarily suffer from aesthetic problems when the lesions are located in the facial area. 4 The stigma associated with having a disfiguring facial birthmark can lead to significant negative psychosocial impacts, 5 , 6 disturbing the development of interpersonal and personality relationships. 5 Physical appearance is usually considered higher than a person’s character.…”

“… 4 The stigma associated with having a disfiguring facial birthmark can lead to significant negative psychosocial impacts, 5 , 6 disturbing the development of interpersonal and personality relationships. 5 Physical appearance is usually considered higher than a person’s character. 6 Apart from cosmetic disfigurement, PWS hypertrophy may also impair hearing, sight, nasal breathing, and speech.…”