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患者报告的慢性炎症性皮肤病医疗护理评估:一项基于企业的调查。

Patient-reported assessment of medical care for chronic inflammatory skin diseases: an enterprise-based survey.

作者信息

Wolk Kerstin, Schielein Maximilian, Maul Julia-Tatjana, Widmayer Fontaine, Wanke Kerstin, Fischmann Wolfgang, Nathan Petra, Sabat Robert

机构信息

Psoriasis Research and Treatment Center, Charité - Universitätsmedizin Berlin, Corporate Member of Freie Universität Berlin and Humboldt-Universität zu Berlin, Berlin, Germany.

Interdisciplinary Group Molecular Immunopathology, Dermatology/Medical Immunology, Charité - Universitätsmedizin Berlin, Corporate Member of Freie Universität Berlin and Humboldt-Universität zu Berlin, Berlin, Germany.

出版信息

Front Med (Lausanne). 2024 Apr 18;11:1384055. doi: 10.3389/fmed.2024.1384055. eCollection 2024.

Abstract

BACKGROUND

Chronic inflammatory skin diseases (CISDs) are among the most common diseases in the Western world. Current estimates of medical care for CISDs are primarily based on surveys among patients in medical care facilities and on health insurance data.

AIM

Survey-based examination to what extent CISD patients in health-aware environment consider their skin disease to be controlled.

METHODS

The survey of CISD patients was carried out in 2022 among the employees of a pharmaceutical company located in Germany and Switzerland. Software-based, anonymous, self-reported questionnaires were used.

RESULTS

The number of employees, who answered the questionnaire, was 905. Of these, 222 participants (24.5%) reported having at least one CISD. 28.7% of participants with CISD described their disease as being hardly or not controlled. Regarding the nature of disease, more than one third of participants suffering from hidradenitis suppurativa (HS) or psoriasis fell into the hardly/not controlled category. In contrast, the largest proportion of participants with chronic spontaneous urticaria (43%) or atopic dermatitis (42%) considered their CISD to be completely or well controlled. Only 35.5% of CISD sufferers stated that they were currently under medical care for their skin condition. Being under medical care, however, had no influence on the extent CISD sufferers considered their skin disease to be controlled. The number of active CISD episodes but not the total number of symptomatic days per year was negatively associated with poor disease control ( = 0.042 and  = 0.856, respectively). Poor disease control had a negative effect on the personal and professional lives of those affected, as deduced from its positive association with the extent of daily activity impairment and presenteeism ( = 0.005 and  = 0.005, respectively). Moreover, 41.4 and 20.7% of participants with hardly/not controlled disease stated that their CISD had a moderate and severe or very severe impact on their overall lives ( < 0.001), respectively. A severe or very severe impact of their CISD on their overall life was most commonly reported by participants with HS.

CONCLUSION

Medical care for CISDs, even in an environment with high socio-economic standard and high health-awareness, still appears to be limited and has a negative impact on individuals and society.

摘要

背景

慢性炎症性皮肤病(CISDs)是西方世界最常见的疾病之一。目前对CISDs医疗护理的估计主要基于对医疗机构患者的调查以及医疗保险数据。

目的

通过基于调查的方式,研究在具有健康意识的环境中,CISD患者认为其皮肤病得到控制的程度。

方法

2022年,对位于德国和瑞士的一家制药公司的员工进行了CISD患者调查。采用基于软件的匿名自填式问卷。

结果

回答问卷的员工有905人。其中,222名参与者(24.5%)报告至少患有一种CISD。28.7%的CISD参与者表示其疾病几乎未得到控制或完全未得到控制。就疾病性质而言,超过三分之一的化脓性汗腺炎(HS)或银屑病患者属于几乎未得到控制/未得到控制类别。相比之下,慢性自发性荨麻疹患者(43%)或特应性皮炎患者(42%)中,认为其CISD得到完全或良好控制的比例最高。只有35.5%的CISD患者表示他们目前正在接受皮肤病的医疗护理。然而,接受医疗护理对CISD患者认为其皮肤病得到控制的程度没有影响。每年活跃的CISD发作次数而非每年症状天数的总数与疾病控制不佳呈负相关(分别为=0.042和=0.856)。从疾病控制不佳与日常活动受损程度和出勤主义的正相关关系推断(分别为=0.005和=0.005),疾病控制不佳对受影响者的个人和职业生活产生负面影响。此外,疾病几乎未得到控制/未得到控制的参与者中,分别有41.4%和20.7%表示其CISD对他们的整体生活有中度和重度或非常严重的影响(<0.001)。HS患者最常报告其CISD对他们的整体生活有严重或非常严重的影响。

结论

即使在社会经济水平高且健康意识强的环境中,CISDs的医疗护理似乎仍然有限,并且对个人和社会产生负面影响。

https://cdn.ncbi.nlm.nih.gov/pmc/blobs/400a/11064793/56d71d7d62bd/fmed-11-1384055-g001.jpg

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