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与可见性皮肤病相关的耻辱感评估:患者报告结局指标的系统评价与评估

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

作者信息

Luck-Sikorski C, Roßmann P, Topp J, Augustin M, Sommer R, Weinberger N A

机构信息

Research Group: Chronic Diseases and Psychological health (COPE), University of Applied Health Sciences SRH Gera, Gera, Germany.

Institute for Health Services Research in Dermatology and Nursing (IVDP), German Centre for Health Services Research in Dermatology (CVderm), University Medical Centre Hamburg-Eppendorf (UKE), Hamburg, Germany.

出版信息

J Eur Acad Dermatol Venereol. 2022 Apr;36(4):499-525. doi: 10.1111/jdv.17833. Epub 2021 Dec 21.

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.

摘要

对可见性皮肤病的误解广泛存在,患者常常因其病情面临歧视和污名化。皮肤病污名化所带来的相关负面健康和心理社会后果促使近年来研究活动有所增加,从而产生了各种各样的评估措施。本研究旨在汇总和评估已发表的用于评估可见性皮肤病污名的测量工具的心理测量特性和方法学质量的证据。截至2021年2月,在四个数据库(医学期刊数据库、心理学文摘数据库、科学引文索引数据库和荷兰医学文摘数据库)中检索评估可见性皮肤病污名化的研究。该综述遵循系统评价和Meta分析的首选报告项目(PRISMA)指南。由两名独立研究人员确定有关测量工具开发和/或验证的论文。纳入标准定义如下:(i)在(ii)患有皮肤病的人群中进行的定量研究,使用(iii)明确评估(iv)感知到的或公众污名化或歧视的问卷,且问卷以(iv)英语或德语提供。基于共识的健康测量工具标准(COSMIN)清单用于评估其心理测量特性和偏倚风险。共识别出35项使用21种工具的研究。20种工具侧重于评估可见性皮肤病患者所感知到的现实情况,而仅用两种工具评估了公众污名。12种量表可推荐使用,而9种工具在进一步研究评估其质量后有可能被推荐。需要注意一些局限性。仅纳入了英语和德语的研究。对自行构建的工具的研究可能会产生新的经过验证的工具,但目前这些工具未纳入综述。可以推荐几种经过验证的工具供使用。未来需要针对不同可见性皮肤病、儿童和青少年以及普通公众的污名评估开展研究。

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