Department of Dermatology, University of Michigan, Ann Arbor, Michigan, USA.
European Hidradenitis Suppurativa Foundation e.V., Dessau, Germany.
Exp Dermatol. 2022 Sep;31 Suppl 1(Suppl 1):33-39. doi: 10.1111/exd.14609.
Research interest in Hidradenitis Suppurativa (HS) has grown exponentially over the past decades. Several groups have worked to develop novel scores that address the drawbacks of existing investigator-assessed and patient-reported outcome measures currently used in HS trials, clinical practice and research. In clinical trial settings, the drawbacks of the HiSCR have become apparent; mainly, it is lack of a dynamic measurement of draining tunnels. The newly developed (dichotomous) IHS4 and HASI-R are backed up by adequate validation data and are good contenders to become the new primary outcome measure in HS clinical trials. Patient-reported outcomes, as well as physician reported measures, are being developed by the HIdradenitis SuppuraTiva cORe outcomes set International Collaboration (HISTORIC). For example, the Hidradenitis Suppurativa Quality of Life (HiSQOL) score is a validated measure of HS-specific quality of life and is already being used in many HS trials. Magnitude of pain measurement via a 0-10 numerical rating scale is well-established; however, consensus is still required to ensure consistent administration and interpretation of the instrument. A longitudinal measurement over multiple days rather than at one time point, such as for example the Pain Index could provide increased reliability and reduced recall bias. Ultimately, these newly developed scores and tools can be included in a standardized registry to be used in routine clinical practice.
过去几十年来，对化脓性汗腺炎（HS）的研究兴趣呈指数级增长。许多研究小组致力于开发新的评分系统，以解决目前在 HS 临床试验、临床实践和研究中使用的现有研究者评估和患者报告的结果测量方法的缺点。在临床试验中，HiSCR 的缺点已经很明显；主要是，它缺乏对引流隧道的动态测量。新开发的（二分法）IHS4 和 HASI-R 有充分的验证数据支持，是成为 HS 临床试验新的主要结局测量指标的有力竞争者。患者报告的结果以及医生报告的测量方法，正在由化脓性汗腺炎核心结局设定国际合作组织（HISTORIC）开发。例如，化脓性汗腺炎生活质量（HiSQOL）评分是一种经过验证的 HS 特异性生活质量测量方法，已经在许多 HS 试验中使用。通过 0-10 数字评分量表对疼痛程度进行测量已经得到了很好的证实；然而，仍然需要达成共识，以确保仪器的一致管理和解释。与仅在一个时间点相比，如疼痛指数，在多个连续日进行纵向测量可以提供更高的可靠性和降低回忆偏倚。最终，这些新开发的评分系统和工具可以被纳入一个标准化的登记系统，以便在常规临床实践中使用。
