Assessment of stigma related to visible skin diseases: a systematic review and evaluation of patient‐reported outcome measures

Abstract

Misconceptions about visible skin diseases are widespread, and patients often face discrimination and stigmatization due to their condition. The associated negative health and psychosocial consequences of stigmatization in skin diseases have prompted an increase in research activity in recent times, resulting in a wide variety of assessment measures. This study aimed at aggregating and evaluating evidence of psychometric properties and methodological quality of published measures to assess stigma in visible skin diseases. Studies assessing stigmatization in visible skin diseases were searched in four databases (Medline, PsycINFO, Web of Science and Embase) until February 2021. The review followed PRISMA guidelines. Papers regarding development and/or validation of measures were identified by two independent researchers. Inclusion criteria were defined as follows: (i) quantitative studies in (ii) populations with skin diseases using (iii) questionnaires explicitly assessing (iv) perceived or public stigmatization or discrimination available in (iv) English or German language. The COnsensus‐based Standards of health Measurement INstruments (COSMIN) checklist was used to evaluate their psychometric properties and risk of bias. 35 studies using 21 instruments were identified. Twenty instruments focused on assessing the perceived reality of those affected by visible skin diseases, while public stigma was only assessed by two instruments. Twelve scales could be recommended for use, while nine instruments had the potential to be recommended after further studies have assessed their quality. Some limitations are to be noted. Only studies in English and German were included. Research on self‐constructed instruments can lead to new validated instruments, but they were not included in the review at this point. Several validated instruments could be recommended for use. Future research is needed regarding the assessment of stigma across different visible skin diseases, in children and adolescents, and in the general public.

Prevalence of skin Neglected Tropical Diseases and superficial fungal infections in two peri-urban schools and one rural community setting in Togo

“…The question on the data collection form was “If a skin infection is diagnosed, did the study participant experience stigma as a result of their infection?” ( S4 Supplementary ). The dermatologist asked if the individual was being treated differently or unfairly as a result of their skin infection, a common approach to gain an indication around levels of stigma [ 11 ].…”

“…(S4 Supplementary). The dermatologist asked if the individual was being treated differently or unfairly as a result of their skin infection, a common approach to gain an indication around levels of stigma [11].…”

Self‐reported stigmatisation among patients with atopic dermatitis (AD) or chronic spontaneous urticaria (CSU): A cross‐sectional study

“…Indeed contrasting our results with 6SS, internal stigmatisation is correlated to disease severity in visual skin diseases. 15 A variety of instruments measuring different aspects of stigmatisation among dermatological patients have been implemented in research and clinical settings, 15,43,44 and we suggest that this operationalization of stigmatisation is standardised. A standardisation will prompt comparability of future research and give clinicians the best possible screening tool for stigmatisation.…”

Patient Unique Stigmatization Holistic tool in dermatology (PUSH‐D): Development and validation of a dermatology‐specific stigmatization assessment tool

“…We found a recent systematic review on PROM assessing stigma in VSD. Two questionnaires, the 6‐item Stigmatization Scale 20 and the Impact of Chronic Skin Disease on Daily Life (ISDL) Stigma sub‐scale, 21 are dermatology‐specific; however, they were not recommended for use as they both lack structural validity, and their methodology was qualified as inadequate 16 . Furthermore, among dermatology specific quality of life scales, several instruments included few items related to stigmatization.…”

“…In order to capture the impact and degree of stigmatization in individuals with VSD, valid and reliable assessment tools are needed. A recent systematic review on patient reported outcome measures (PROM) assessing stigma in VSD concluded that 12 instruments could be recommended for use; however, none of these tools are specific for dermatology 16 . The purpose of the current study was therefore to develop and validate a dermatologic‐specific questionnaire to evaluate stigmatization in individuals with VSD.…”