Vellaichamy Gautham, Braunberger Taylor L, Jones Jessica L, Peacock Anjelica, Nahhas Amanda F, Hamzavi Iltefat H
Department of Dermatology, Wayne State University, Detroit, MI, USA.
Department of Dermatology, Henry Ford Hospital, Detroit, MI, USA.
G Ital Dermatol Venereol. 2019 Apr;154(2):137-147. doi: 10.23736/S0392-0488.18.06021-2. Epub 2018 Oct 29.
Hidradenitis suppurativa, also known as acne inversa, is a chronic recurrent inflammatory disease of the skin making management challenging and continuously evolving. A large number of modalities exist aimed at quantifying the efficacy of treatment in studies on hidradenitis suppurativa. Both physician-reported and patient-reported outcomes are used as endpoints in these studies; however, the vast majority of the modalities used to survey these reported outcomes lack validation and congruence between studies. Heterogeneity of outcome measures and lack of standardization from study to study make it difficult to design future hidradenitis suppurativa trials and to compare results. This high variability between studies further contributes to the lack of high-quality evidence available to guide clinical management decisions of this inflammatory skin disease. Therefore this review aims to assess the modalities frequently used to assess patient-reported treatment outcomes in hidradenitis suppurativa. Patient-reported outcomes in hidradenitis suppurativa include outcomes regarding symptoms and disease progression, measures of treatment satisfaction, quality of life surveys, impairment of function, pain, and patient-reported outcomes combined with physician-reported outcomes. Nearly all surveys demonstrate significant heterogeneity, lack standardization, and many are not validated or constructed specifically for the assessment of hidradenitis suppurativa. Yet patient-reported outcomes on symptoms and disease severity, treatment satisfaction, and quality of life are instrumental in evaluating hidradenitis suppurativa treatment efficacy in clinical trials. As such, standardization and validation of patient-reported outcome instruments are essential for comparability among studies and improved quality of evidence.
化脓性汗腺炎，又称反向性痤疮，是一种慢性复发性皮肤炎症性疾病，其治疗具有挑战性且不断发展。在化脓性汗腺炎的研究中，存在大量旨在量化治疗效果的方法。在这些研究中，医生报告的结果和患者报告的结果均被用作终点；然而，用于调查这些报告结果的绝大多数方法缺乏研究间的验证和一致性。结果测量的异质性以及不同研究之间缺乏标准化，使得设计未来的化脓性汗腺炎试验并比较结果变得困难。研究之间的这种高度变异性进一步导致缺乏高质量的证据来指导这种炎症性皮肤病的临床管理决策。因此，本综述旨在评估化脓性汗腺炎中常用于评估患者报告的治疗结果的方法。化脓性汗腺炎患者报告的结果包括有关症状和疾病进展的结果、治疗满意度的测量、生活质量调查、功能损害、疼痛以及患者报告的结果与医生报告的结果相结合。几乎所有调查都显示出显著的异质性，缺乏标准化，而且许多调查未经验证或并非专门为评估化脓性汗腺炎而构建。然而，患者报告的症状和疾病严重程度、治疗满意度以及生活质量的结果对于评估化脓性汗腺炎在临床试验中的治疗效果至关重要。因此，患者报告结果工具的标准化和验证对于研究之间的可比性以及提高证据质量至关重要。
