Silva Jaquelini Barboza da, Wright Alison K, Carvalho André V E, Griffiths Christopher E M, Ashcroft Darren M
Department of Life Sciences, University of Santa Cruz do Sul, Santa Cruz do Sul, Brazil.
Centre for Pharmacoepidemiology and Drug Safety, Division of Pharmacy and Optometry, School of Health Sciences, Faculty of Biology, Medicine and Health, NIHR Manchester Biomedical Research Centre, University of Manchester, Manchester, UK.
Int J Dermatol. 2025 Feb;64(2):325-332. doi: 10.1111/ijd.17387. Epub 2024 Jul 17.
Psoriasis significantly burdens patients' lives, but there is limited data on this in Brazil.
Between May 2022 and January 2023, we conducted a cross-sectional online survey of 563 Brazilian residents aged ≥18 years who had been diagnosed with psoriasis. Spearman's correlation (r) was used to test the correlation between self-assessed disease severity (Simplified Psoriasis Index [saSPI] extent score; range 0 [clear/minor] to 40 [widespread/severe]) and health-related quality of life (QoL, score of 1 means perfect health) and capability (ICECAP-A: score of 1 means full capability) measures. Multivariable linear regression was used to identify predictors of QoL and capability. A thematic analysis examined the free-text responses and identified common themes.
The mean age of participants was 42.1 ± 12.4 years, and over half had at least one other long-term condition. The mean QoL score was 0.59 ± 0.25, and the mean capability score was 0.71 ± 0.21. At the time of survey completion, over 80% of respondents reported some level of pain and/or discomfort, and 86% reported feeling anxious and/or depressed. The mean self-assessed saSPI was 7.8 ± 8.6, which negatively correlated with health-related QoL (r = -0.49, P < 0.05) and capability (r = -0.44, P < 0.05). Significant predictors of poorer QoL and reduced capability included high saSPI, number of psoriasis flares and comorbidities, female gender, Black ethnicity, and employment status (unemployed, long-term sick). Frequently reported areas that impacted patients were social stigma/prejudice, powerlessness, lack of education and public awareness, and difficulty obtaining appropriate care/treatment.
We found that the clinical manifestations, severity, and associated comorbidities of psoriasis negatively impacted health-related QoL and capability, along with feelings of stigmatization and barriers to specialist treatment. This highlights the need for better access to care and awareness of the disease to improve the lives of people living with psoriasis in Brazil.
银屑病给患者的生活带来了沉重负担，但巴西在这方面的数据有限。
在2022年5月至2023年1月期间，我们对563名年龄≥18岁、被诊断患有银屑病的巴西居民进行了一项横断面在线调查。采用斯皮尔曼相关性分析（r）来检验自我评估的疾病严重程度（简化银屑病指数[saSPI]范围评分；范围从0[清除/轻微]到40[广泛/严重]）与健康相关生活质量（QoL，评分为1表示健康状况完美）和能力（ICECAP - A：评分为1表示完全有能力）指标之间的相关性。使用多变量线性回归来确定生活质量和能力的预测因素。通过主题分析检查自由文本回复并确定共同主题。
参与者的平均年龄为42.1±12.4岁，超过一半的人至少患有一种其他长期疾病。平均生活质量评分为0.59±0.25，平均能力评分为0.71±0.21。在调查完成时，超过80%的受访者报告有一定程度的疼痛和/或不适，86%的受访者报告感到焦虑和/或抑郁。自我评估的平均saSPI为7.8±8.6，与健康相关生活质量（r = -0.49，P < 0.05）和能力（r = -0.44，P < 0.05）呈负相关。生活质量较差和能力下降的显著预测因素包括高saSPI、银屑病发作次数和合并症、女性、黑人种族以及就业状况（失业、长期患病）。经常报告的影响患者的方面包括社会耻辱/偏见、无能为力、缺乏教育和公众意识，以及难以获得适当的护理/治疗。
我们发现银屑病的临床表现、严重程度和相关合并症对健康相关生活质量和能力产生了负面影响，同时还有耻辱感和专科治疗障碍。这凸显了改善巴西银屑病患者获得护理的机会和提高对该疾病认识的必要性，以改善银屑病患者的生活。
