| Title: |
Development and Validation of a Disease-specific Outcomes Tool for the Assessment of Patient Benefits of Treatment for Hidradenitis Suppurativa: the PBI-HS |
| Authors: |
Natalia Kirsten; Matthias Augustin; Christine Blome; Janine Topp; Richard Schwager; Falk G. Bechara; Gefion Girbig; Andreas Pinter; Florian Anzengruber; Mareen Lindegaard; Christos C. Zouboulis; Marina Otten |
| Source: |
Acta Dermato-Venereologica, Vol 105 (2025) |
| Publisher Information: |
Medical Journals Sweden, 2025. |
| Publication Year: |
2025 |
| Collection: |
LCC:Dermatology |
| Subject Terms: |
hidradenitis suppurativa; life quality; patient outcome assessment; patient-reported outcomes; Dermatology; RL1-803 |
| Description: |
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. |
| Document Type: |
article |
| File Description: |
electronic resource |
| Language: |
English |
| ISSN: |
0001-5555; 1651-2057 |
| Relation: |
https://medicaljournalssweden.se/actadv/article/view/41298; https://doaj.org/toc/0001-5555; https://doaj.org/toc/1651-2057 |
| DOI: |
10.2340/actadv.v105.41298 |
| Access URL: |
https://doaj.org/article/ed0dd4aba06c490789dea6713fc3391c |
| Accession Number: |
edsdoj.0dd4aba06c490789dea6713fc3391c |
| Database: |
Directory of Open Access Journals |