Kirsten Natalia, Augustin Matthias, Blome Christine, Topp Janine, Schwager Richard, Bechara Falk G, Girbig Gefion, Pinter Andreas, Anzengruber Florian, Lindegaard Mareen, Zouboulis Christos C, Otten Marina
Institute for Health Services Research in Dermatology and Nursing (IVDP), University Medical Center Hamburg-Eppendorf (UKE), Hamburg, Germany.
Dermatologic Surgery Unit, Department of Dermatology, Ruhr-University Bochum, Bochum, Germany.
Acta Derm Venereol. 2025 Mar 6;105:adv41298. doi: 10.2340/actadv.v105.41298.
Hidradenitis suppurativa is a chronic skin disease associated with significant disease burden. To assess patients' treatment benefits, disease-specific outcomes measurement is needed. This study aimed to develop a questionnaire called Patient Benefit Index for hidradenitis suppurativa (PBI-HS). After an open-item survey, the items were condensed into a 26-item questionnaire on patient needs and benefits, with a 5-point Likert scale. In the validation study, construct and content validity, responsiveness, and feasibility of the questionnaire were assessed at 2 time points. A 26-item questionnaire was created following open-item generation by n = 72 patients. In the validation study, 3 items perceived as most relevant by patients were: "to be free of pain" (mean: 3.6 on a scale of 0-4), "to be free of inflammation" (mean: 3.6), "to have no more scars" (mean: 3.1). Significant correlations of PBI-HS at follow-up visit were found with the physical global assessment for hidradenitis suppurativa (HS-PGA) (r = -0.471; p = 0.000), number of inflammatory lesions (r = -0.359; p = 0.005), and DLQI (r = -0.383; p = 0.003), indicating less disease burden in patients with higher treatment benefits. The PBI-HS is a feasible and valid instrument to assess patient-reported treatment benefits in hidradenitis suppurativa.
化脓性汗腺炎是一种伴有严重疾病负担的慢性皮肤病。为评估患者的治疗益处，需要进行疾病特异性结局测量。本研究旨在开发一种名为化脓性汗腺炎患者获益指数（PBI-HS）的问卷。在一项开放式调查之后，这些条目被浓缩成一份关于患者需求和益处的包含26个条目的问卷，采用5级李克特量表。在验证研究中，在两个时间点评估了该问卷的结构效度、内容效度、反应度和可行性。在由n = 72名患者进行开放式条目生成后创建了一份包含26个条目的问卷。在验证研究中，患者认为最相关的3个条目是：“无痛”（平均得分：在0至4分的量表上为3.6分）、“无炎症”（平均得分：3.6分）、“不再有疤痕”（平均得分：3.1分）。随访时发现PBI-HS与化脓性汗腺炎的体格整体评估（HS-PGA）显著相关（r = -0.471；p = 0.000）、炎症性皮损数量（r = -0.359；p = 0.005）以及皮肤病生活质量指数（DLQI）（r = -0.383；p = 0.003），表明治疗益处较高的患者疾病负担较轻。PBI-HS是一种可行且有效的工具，可用于评估化脓性汗腺炎患者报告的治疗益处。
