评估白癜风在临床实践:专家的横断面调查。

IF 3.9
Jolien Duponselle, Marlide R Jukema, Albert Wolkerstorfer, Khaled Ezzedine, Iltefat Hamzavi, Julien Seneschal, Viktoria Eleftheriadou, Amit G Pandya, Amit Garg, Anand Ganesan, Boon Kee Goh, Davinder Parsad, Deepti Ghia, David Rosmarin, Giovanni Leone, Henry W Lim, Hyun Jeong Ju, Jung Min Bae, John Ferguson, Laila Benzekri, Marwa Abdallah, Markus Böhm, Mauro Picardo, Mehdi Rashighi, M Ramam, Michelle Rodrigues, Noufal Raboobee, Phyllis Spuls, Samia Esmat, Steven Tien Guan Thng, Thierry Passeron, Victor Huang, Reinhart Speeckaert, Nanja van Geel
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引用次数: 0

摘要

背景:临床实践中以患者为中心的结果评估对于优化护理至关重要。虽然白癜风临床试验的核心领域集(CDS)于2015年建立,以标准化结果,但目前没有用于临床实践的CDS,导致评估不一致,使有效的疾病管理复杂化。目的:本研究旨在调查目前白癜风专家在临床实践中评估的结果和特征,并代表了开发核心结果集(COS)的步骤之一,包括临床实践的结果和结果测量工具。方法:对来自六大洲的31位白癜风专家进行横断面调查。该调查包括28个预先确定的结果和特征。参与者有机会提出额外的选择,当评估≥70%时被认为是“一般评估”。结果:6个结局和21个特征被“一般评估”。最常选择的结果包括白癜风演变、治疗耐受性/不良事件,其次是疾病活动性和白癜风程度。结论:与临床试验的CDS相比,本研究在评估结果上有相似之处,但也有显著差异。这些结果是为临床实践开发COS的准备步骤,包括专家和非专家皮肤科医生和患者的参与。
本文章由计算机程序翻译,如有差异,请以英文原文为准。
Assessment of vitiligo in clinical practice: a cross-sectional survey among experts.

Background: The assessment of patient-centered outcomes in clinical practice is essential for optimal care. While a core domain set (CDS) for vitiligo clinical trials was established in 2015 (CDS for trials) to standardize outcomes, no CDS currently exists for clinical practice, resulting in inconsistent assessment complicating effective disease management.

Objective: This study aimed to investigate outcomes and characteristics currently assessed by vitiligo experts in clinical practice and represents one of the steps toward developing a core outcome set (COS) including outcomes and outcome measurement instruments for clinical practice.

Methods: A cross-sectional survey was conducted among 31 vitiligo experts from six continents. The survey consisted of 28 predefined outcomes and characteristics. Participants were given the opportunity to propose additional options, which were considered 'generally assessed' when assessed by ≥ 70%.

Results: Six outcomes and 21 characteristics were 'generally assessed'. The most frequently chosen outcomes included vitiligo evolution, tolerability of treatment/adverse events, followed by disease activity and vitiligo extent.

Conclusion: This study shows similarities but also remarkable differences in assessed outcomes compared to the CDS for clinical trials. These results serve as a preparatory step toward developing a COS for clinical practice with the involvement of expert and non-expert dermatologists and patients.

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