Jonathan D. Greenzaid, Matthew C. Johnson, Steven R. Feldman
{"title":"Evaluation of public perception towards patients with hidradenitis suppurativa and atopic dermatitis","authors":"Jonathan D. Greenzaid, Matthew C. Johnson, Steven R. Feldman","doi":"10.1002/jvc2.489","DOIUrl":null,"url":null,"abstract":"<p>Dear Editor,</p><p>Hidradenitis suppurativa (HS) and atopic dermatitis (AD) are chronic inflammatory cutaneous disorders associated with psychosocial distress. The stigma of HS and AD often creates a burden on patients, leading to a negative self-image and higher rates of anxiety and depression.<span><sup>1-3</sup></span> However, few studies investigate the general public's endorsement of stigmatizing attitudes towards people with cutaneous diseases.<span><sup>4, 5</sup></span> We aimed to analyze the perception towards individuals with HS and AD and evaluate factors leading to higher rates of stigmatization.</p><p>A 51-question survey was distributed to subjects over the age of 18 on the online survey recruitment platform Amazon Mechanical Turk (MTurk). To improve survey reliability, a series of four screening questions testing participants' attentiveness were randomly embedded throughout the survey. Patients were ineligible for the study if they answered one of the screening questions incorrectly. The survey displayed two images each of moderate-to-severe HS and AD and then examined participants' attitudes towards these images. The questions measuring stigma were separated into three categories based on previous studies<span><sup>4, 5</sup></span>: Desire to Social Distance, Stereotype Endorsement and Belief in AD Myths. Each question was scored on a 1–5 Likert scale, with 1 being the most stigmatizing attitude and 5 the least. Responses that were scored as a 1 or 2 were considered as the endorsement of stigmatizing attitudes when completing statistical analysis. Fisher's exact test was used to compare differences in attitudes towards patients with HS versus AD, and patients currently affected or with a history of HS/AD versus those with no history of HS/AD.</p><p>A total of 497 participants responded to the survey, of which 350 answered the screening questions correctly (70% response rate, Table 1). Participants reported not feeling comfortable hiring someone with HS and AD (17.4% vs. 18.3%, <i>p</i> = 0.8), believing patients with HS and AD have poor hygiene (27.7% and 28.0%, <i>p</i> = 0.9) and endorsed the myth that people with HS and AD are to blame for their condition (64.3% vs. 64.6%, <i>p</i> = 1.0, Table 2). There was a minimal difference in the stigma towards individuals with HS versus AD. Survey respondents had more stigmatizing attitudes towards wanting to date an individual with AD compared to HS (mean Likert score 3.49 vs. 3.68, <i>p</i> = 0.03), and this was the only statistically significant difference when comparing average Likert scores towards individuals with HS versus AD. Participants not currently affected or without a history of HS or AD had more stigmatizing attitudes compared to individuals with a history of HS or AD (<i>p</i> < 0.0001, Table 2).</p><p>Patients with HS and AD often experience reduced quality of life, which is in part due to the perceived stigma of having cutaneous disease. Our study is limited by self-reported outcomes recorded via MTurk crowdsourcing software. Still, the findings set the foundation for future research on the negative biases towards patients with HS and AD. Moreover, participants with a history of HS or AD were less likely to have stigmatizing viewpoints towards HS and AD individuals. Increasing health education initiatives directed toward the general public on the causes and treatments for HS and AD may reduce the stigma of these cutaneous diseases.</p><p><i>Study conception and design</i>: Jonathan D. Greenzaid, Matthew C. Johnson and Steven R. Feldman. <i>Data collection</i>: Jonathan D. Greenzaid and Matthew C. Johnson. <i>Analysis and interpretation of results</i>: Jonathan D. Greenzaid, Matthew C. Johnson and Steven R. Feldman. <i>Draft manuscript preparation</i>: Jonathan D. Greenzaid. All authors reviewed the results and approved the final version of the manuscript.</p><p>S. R. F. has received research, speaking and/or consulting support from Eli Lilly and Company, GlaxoSmithKline/Stiefel, AbbVie, Janssen, Alovtech, vTv Therapeutics, Bristol-Myers Squibb, Samsung, Pfizer, Boehringer Ingelheim, Amgen, Dermavant, Arcutis, Novartis, Novan, UCB, Helsinn, Sun Pharma, Almirall, Galderma, Leo Pharma, Mylan, Celgene, Ortho Dermatology, Menlo, Merck & Co, Qurient, Forte, Arena, Biocon, Accordant, Argenx, Sanofi, Regeneron, the National Biological Corporation, Caremark, Teladoc, BMS, Ono, Micreos, Eurofins, Informa, UpToDate and the National Psoriasis Foundation. He is founder and part owner of Causa Research and holds stock in Sensal Health. The remaining authors declare no conflicts of interest.</p><p>Reviewed and approved by Wake Forest University Health Sciences IRB IRB00075066.</p>","PeriodicalId":94325,"journal":{"name":"JEADV clinical practice","volume":"3 5","pages":"1682-1685"},"PeriodicalIF":0.0000,"publicationDate":"2024-08-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://onlinelibrary.wiley.com/doi/epdf/10.1002/jvc2.489","citationCount":"0","resultStr":null,"platform":"Semanticscholar","paperid":null,"PeriodicalName":"JEADV clinical practice","FirstCategoryId":"1085","ListUrlMain":"https://onlinelibrary.wiley.com/doi/10.1002/jvc2.489","RegionNum":0,"RegionCategory":null,"ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":null,"EPubDate":"","PubModel":"","JCR":"","JCRName":"","Score":null,"Total":0}
引用次数: 0
Abstract
Dear Editor,
Hidradenitis suppurativa (HS) and atopic dermatitis (AD) are chronic inflammatory cutaneous disorders associated with psychosocial distress. The stigma of HS and AD often creates a burden on patients, leading to a negative self-image and higher rates of anxiety and depression.1-3 However, few studies investigate the general public's endorsement of stigmatizing attitudes towards people with cutaneous diseases.4, 5 We aimed to analyze the perception towards individuals with HS and AD and evaluate factors leading to higher rates of stigmatization.
A 51-question survey was distributed to subjects over the age of 18 on the online survey recruitment platform Amazon Mechanical Turk (MTurk). To improve survey reliability, a series of four screening questions testing participants' attentiveness were randomly embedded throughout the survey. Patients were ineligible for the study if they answered one of the screening questions incorrectly. The survey displayed two images each of moderate-to-severe HS and AD and then examined participants' attitudes towards these images. The questions measuring stigma were separated into three categories based on previous studies4, 5: Desire to Social Distance, Stereotype Endorsement and Belief in AD Myths. Each question was scored on a 1–5 Likert scale, with 1 being the most stigmatizing attitude and 5 the least. Responses that were scored as a 1 or 2 were considered as the endorsement of stigmatizing attitudes when completing statistical analysis. Fisher's exact test was used to compare differences in attitudes towards patients with HS versus AD, and patients currently affected or with a history of HS/AD versus those with no history of HS/AD.
A total of 497 participants responded to the survey, of which 350 answered the screening questions correctly (70% response rate, Table 1). Participants reported not feeling comfortable hiring someone with HS and AD (17.4% vs. 18.3%, p = 0.8), believing patients with HS and AD have poor hygiene (27.7% and 28.0%, p = 0.9) and endorsed the myth that people with HS and AD are to blame for their condition (64.3% vs. 64.6%, p = 1.0, Table 2). There was a minimal difference in the stigma towards individuals with HS versus AD. Survey respondents had more stigmatizing attitudes towards wanting to date an individual with AD compared to HS (mean Likert score 3.49 vs. 3.68, p = 0.03), and this was the only statistically significant difference when comparing average Likert scores towards individuals with HS versus AD. Participants not currently affected or without a history of HS or AD had more stigmatizing attitudes compared to individuals with a history of HS or AD (p < 0.0001, Table 2).
Patients with HS and AD often experience reduced quality of life, which is in part due to the perceived stigma of having cutaneous disease. Our study is limited by self-reported outcomes recorded via MTurk crowdsourcing software. Still, the findings set the foundation for future research on the negative biases towards patients with HS and AD. Moreover, participants with a history of HS or AD were less likely to have stigmatizing viewpoints towards HS and AD individuals. Increasing health education initiatives directed toward the general public on the causes and treatments for HS and AD may reduce the stigma of these cutaneous diseases.
Study conception and design: Jonathan D. Greenzaid, Matthew C. Johnson and Steven R. Feldman. Data collection: Jonathan D. Greenzaid and Matthew C. Johnson. Analysis and interpretation of results: Jonathan D. Greenzaid, Matthew C. Johnson and Steven R. Feldman. Draft manuscript preparation: Jonathan D. Greenzaid. All authors reviewed the results and approved the final version of the manuscript.
S. R. F. has received research, speaking and/or consulting support from Eli Lilly and Company, GlaxoSmithKline/Stiefel, AbbVie, Janssen, Alovtech, vTv Therapeutics, Bristol-Myers Squibb, Samsung, Pfizer, Boehringer Ingelheim, Amgen, Dermavant, Arcutis, Novartis, Novan, UCB, Helsinn, Sun Pharma, Almirall, Galderma, Leo Pharma, Mylan, Celgene, Ortho Dermatology, Menlo, Merck & Co, Qurient, Forte, Arena, Biocon, Accordant, Argenx, Sanofi, Regeneron, the National Biological Corporation, Caremark, Teladoc, BMS, Ono, Micreos, Eurofins, Informa, UpToDate and the National Psoriasis Foundation. He is founder and part owner of Causa Research and holds stock in Sensal Health. The remaining authors declare no conflicts of interest.
Reviewed and approved by Wake Forest University Health Sciences IRB IRB00075066.
化脓性汗腺炎(HS)和特应性皮炎(AD)是与社会心理困扰相关的慢性炎症性皮肤病。HS和AD的耻辱常常给患者带来负担,导致负面的自我形象和更高的焦虑和抑郁率。1-3然而,很少有研究调查公众对皮肤病患者的污名化态度的认可。4,5我们的目的是分析对HS和AD患者的看法,并评估导致更高的污名化率的因素。在线调查招聘平台亚马逊土耳其机械(MTurk)向18岁以上的受试者分发了51个问题的调查。为了提高调查的可靠性,在整个调查中随机嵌入了一系列四个测试参与者注意力的筛选问题。如果患者错误地回答了其中一个筛查问题,他们就没有资格参加这项研究。该调查显示了两张中度至重度HS和AD的图片,然后调查了参与者对这些图片的态度。根据前人的研究结果,将测量耻感的问题分为三类:对社会距离的渴望、刻板印象认可和对广告神话的信仰。每个问题都以1 - 5的李克特量表打分,1分代表最侮辱的态度,5分代表最不侮辱的态度。在完成统计分析时,得分为1或2的回答被认为是对污名化态度的认可。使用Fisher精确检验比较对HS/AD患者的态度差异,以及目前患有HS/AD或有HS/AD病史的患者与没有HS/AD病史的患者的态度差异。共有497名参与者回应了调查,其中350人正确回答了筛选问题(70%的回复率,表1)。参与者报告说,雇佣患有HS和AD的人感到不舒服(17.4%对18.3%,p = 0.8),认为HS和AD患者的卫生状况不佳(27.7%和28.0%,p = 0.9),并赞同HS和AD患者应该为自己的病情负责的说法(64.3%对64.6%)。p = 1.0,表2)。HS与AD患者的耻辱感差异极小。调查对象对与AD患者约会的态度比HS患者更有偏见(平均李克特得分3.49比3.68,p = 0.03),这是比较HS患者和AD患者的平均李克特得分时唯一有统计学意义的差异。与有HS或AD病史的个体相比,目前未受影响或没有HS或AD病史的参与者有更多的污名化态度(p < 0.0001,表2)。HS和AD患者的生活质量经常下降,部分原因是他们认为患有皮肤病是耻辱。我们的研究受限于通过MTurk众包软件记录的自我报告结果。尽管如此,这些发现为未来对HS和AD患者的负面偏见的研究奠定了基础。此外,有HS或AD病史的参与者不太可能对HS和AD个体持污名化观点。加强针对公众的健康教育活动,了解HS和AD的病因和治疗方法,可能会减少对这些皮肤病的耻辱感。研究概念和设计:Jonathan D. Greenzaid, Matthew C. Johnson和Steven R. Feldman。数据收集:Jonathan D. Greenzaid和Matthew C. Johnson。结果分析与解释:Jonathan D. Greenzaid, Matthew C. Johnson和Steven R. Feldman。草稿准备:Jonathan D. Greenzaid。所有作者审查了结果并批准了最终版本的手稿。R. F.获得了礼来公司、葛兰素史克/Stiefel、艾伯维、杨森、Alovtech、vTv Therapeutics、百时美施贵宝、三星、辉瑞、勃林格殷格翰、安进、Dermavant、Arcutis、诺华、诺万、UCB、赫尔辛基、太阳制药、Almirall、高德美、利奥制药、Mylan、Celgene、Ortho Dermatology、门洛、默克制药的研究、演讲和/或咨询支持;公司、quurient、Forte、Arena、Biocon、Accordant、Argenx、Sanofi、Regeneron、National Biological Corporation、Caremark、Teladoc、BMS、Ono、Micreos、Eurofins、Informa、UpToDate和National牛皮癣基金会。他是Causa Research的创始人和部分所有者,并持有Sensal Health的股票。其余作者声明无利益冲突。维克森林大学健康科学IRB IRB00075066审查并批准。