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医生和患者报告的斑秃严重程度及对生活质量的影响:来自五个欧洲国家的真实世界调查结果

Physician- and Patient-Reported Severity and Quality of Life Impact of Alopecia Areata: Results from a Real-World Survey in Five European Countries.

作者信息

Vañó-Galván Sergio, Blume-Peytavi Ulrike, Farrant Paul, Reygagne Pascal, Johansson Erin, Reed Catherine, Marwaha Simran, Durand Frederick, Piraccini Bianca Maria

机构信息

Ramón y Cajal University Hospital, University of Alcala, Madrid, Spain.

Department of Dermatology, Venerology and Allergology, Charité-Universitätsmedizin, Berlin, Germany.

出版信息

Dermatol Ther (Heidelb). 2023 Dec;13(12):3121-3135. doi: 10.1007/s13555-023-01057-0. Epub 2023 Oct 27.

DOI:10.1007/s13555-023-01057-0
PMID:37889388
原文链接:https://pmc.ncbi.nlm.nih.gov/articles/PMC10689682/
Abstract

INTRODUCTION

Alopecia areata (AA) can negatively affect quality of life (QoL) and is associated with increased prevalence of anxiety and depression (vs people without AA). This study compared physician-assessed and patient self-rated severity of AA in a European sample and described the patient-reported burden of AA stratified by physician-assessed severity.

METHODS

Real-world data were collected from the Adelphi Real World AA Disease Specific Programme™, a retrospective point-in-time cross-sectional survey of dermatologists and their adult patients with AA in five European countries (France, Germany, Italy, Spain, UK). Physicians provided clinical data and an AA severity assessment, according to their own definition of 'mild', 'moderate' and 'severe'. Patients were invited to provide their perception of AA severity and completed patient-reported outcome (PRO) questionnaires, including Skindex-16 for AA (Skindex-16 AA), EuroQol-5-dimension questionnaire 5-level (EQ-5D-5L), Hospital Anxiety and Depression Scale and the Work Productivity and Activity Impairment Questionnaire.

RESULTS

Data for 2083 patients were collected by 239 physicians; 561 of these patients completed PRO questionnaires. In 78.5% of cases with available data (N = 549), there was alignment between patient and physician-rated AA severity (severity was rated higher by physicians in 15.7% of cases, by patients in 5.8% of cases). Data from all PRO instruments showed an increase in patient-reported burden and work and activity impairment with increasing physician-rated AA severity. For the Skindex-16 AA, the Emotions scale had the worst scores; anxiety/depression was the EQ-5D-5L dimension with the highest percentages of patients reporting any perceived problem.

CONCLUSIONS

These data highlight the significant impact that AA can have beyond hair loss, especially for patients with severe AA. There was substantial physician-patient alignment on severity assessment. Higher physician-rated AA severity was associated with higher levels of patient-reported disease burden, including anxiety and depression, and work and activity impairment. These data may help inform appropriate treatment strategies.

摘要

引言

斑秃(AA)会对生活质量(QoL)产生负面影响,并且与焦虑和抑郁患病率增加相关(与无斑秃的人相比)。本研究比较了欧洲样本中医生评估的和患者自评的斑秃严重程度,并描述了根据医生评估的严重程度分层的患者报告的斑秃负担。

方法

从阿德尔菲真实世界斑秃疾病特定项目™收集真实世界数据,这是一项对五个欧洲国家(法国、德国、意大利、西班牙、英国)的皮肤科医生及其成年斑秃患者进行的回顾性即时横断面调查。医生根据他们自己对“轻度”“中度”和“重度”的定义提供临床数据和斑秃严重程度评估。邀请患者提供他们对斑秃严重程度的看法,并完成患者报告结局(PRO)问卷,包括用于斑秃的Skindex-16问卷(Skindex-16 AA)、欧洲五维度健康量表5级(EQ-5D-5L)、医院焦虑抑郁量表以及工作效率和活动障碍问卷。

结果

239名医生收集了2083名患者的数据;其中561名患者完成了PRO问卷。在78.5%有可用数据的病例中(N = 549),患者和医生评定的斑秃严重程度一致(在15.7%的病例中医生评定的严重程度更高,在5.8%的病例中患者评定的严重程度更高)。所有PRO工具的数据显示,随着医生评定的斑秃严重程度增加,患者报告的负担以及工作和活动障碍也增加。对于Skindex-16 AA,情绪量表得分最差;焦虑/抑郁是EQ-5D-5L维度中报告有任何感知问题的患者百分比最高的维度。

结论

这些数据突出了斑秃除脱发外可能产生的重大影响,特别是对于重度斑秃患者。在严重程度评估方面医生与患者有很大程度的一致性。医生评定的斑秃严重程度越高,患者报告的疾病负担水平越高,包括焦虑和抑郁以及工作和活动障碍。这些数据可能有助于为适当的治疗策略提供信息。

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The burden of alopecia areata: A scoping review focusing on quality of life, mental health and work productivity.斑秃的负担:一项聚焦于生活质量、心理健康和工作效率的范围综述。
J Eur Acad Dermatol Venereol. 2023 Jan 27. doi: 10.1111/jdv.18926.
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The Association of Alopecia Areata-Related Emotional Symptoms with Work Productivity and Daily Activity Among Patients with Alopecia Areata.斑秃患者中斑秃相关情绪症状与工作效率及日常活动的关联
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Defining Severity in Alopecia Areata: Current Perspectives and a Multidimensional Framework.
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Medicine (Baltimore). 2025 Feb 7;104(6):e41457. doi: 10.1097/MD.0000000000041457.
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Topical immunotherapy with diphenylcyclopropenone in paediatric patients with alopecia areata-A retrospective study of 97 patients.用二苯环丙烯酮对儿童斑秃患者进行局部免疫治疗——97例患者的回顾性研究
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Thyroid Dysfunction and Alopecia Areata: A Genetic Prediction Causality Analysis Study.甲状腺功能障碍与斑秃:遗传预测因果分析研究。
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