Patient-reported Itch Outcome Measures for Chronic Pruritus in Dystrophic Epidermolysis Bullosa: Exploratory Analysis of a Phase 2 Randomized Controlled Trial

Authors

  • Utako Okata-Karigane Department of Dermatology, Stanford University School of Medicine, Redwood City, CA, United States; Department of Dermatology, Keio University School of Medicine, Tokyo, Japan https://orcid.org/0000-0003-0540-1711
  • Emily S. Gorell Department of Dermatology, University of Colorado Anschutz Medical Campus, Aurora, CO, United States
  • Pirunthan Pathmarajah Department of Dermatology, Stanford University School of Medicine, Redwood City, CA, United States
  • Shufeng Li Department of Dermatology, Stanford University School of Medicine, Redwood City, CA, United States
  • Albert S. Chiou Department of Dermatology, Stanford University School of Medicine, Redwood City, CA, United States

DOI:

https://doi.org/10.2340/actadv.v106.adv-2025-0139

Keywords:

chronic itch, itch numerical rating scale, Itch Severity Item, ItchyQol, health-related quality of life, quality of life question­naires, dystrophic epidermolysis bullosa

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References

de Vere Hunt I, Halley M, Sum K, Yekrang K, Phung M, Good J, et al. A qualitative exploration of the experiences of itch for adults living with epidermolysis bullosa. Br J Dermatol 2022; 187: 261–263. DOI: https://doi.org/10.1111/bjd.21031

Danial C, Adeduntan R, Gorell ES, Lucky AW, Paller AS, Bruckner A, et al. Prevalence and characterization of pruritus in epidermolysis bullosa. Pediatr Dermatol 2015; 32: 53–59. DOI: https://doi.org/10.1111/pde.12391

Korte EWH, Welponer T, Kottner J, van der Werf S, van den Akker PC, Horváth B, et al. Heterogeneity of reported outcomes in epidermolysis bullosa clinical research: A scoping review as a first step towards outcome harmonization. Br J Dermatol 2023; 189: 80–90. DOI: https://doi.org/10.1093/bjd/ljad077

Silverberg JI, Lai JS, Kantor RW, Dalal P, Hickey C, Shaunfield S, et al. Development, validation, and interpretation of the PROMIS Itch Questionnaire: A patient-reported outcome measure for the quality of life impact of itch. J Invest Dermatol 2020; 140: 986–994. DOI: https://doi.org/10.1016/j.jid.2019.08.452

Haest C, Casaer MP, Daems A, De Vos B, Vermeersch E, Morren MA, et al. Measurement of itching: Validation of the Leuven Itch Scale. Burns 2011; 37: 939–950. DOI: https://doi.org/10.1016/j.burns.2011.04.007

Desai NS, Poindexter GB, Monthrope YM, Bendeck SE, Swerlick RA, Chen SC. A pilot quality-of-life instrument for pruritus. J Am Acad Dermatol 2008; 59: 234–244. DOI: https://doi.org/10.1016/j.jaad.2008.04.006

Frew JW, Martin LK, Nijsten T, Murrell DF. Quality of life evaluation in epidermolysis bullosa (EB) through the development of the QOLEB questionnaire: An EB-specific quality of life instrument. Br J Dermatol 2009; 161: 1323–1330. DOI: https://doi.org/10.1111/j.1365-2133.2009.09347.x

Okata-Karigane U, Pathmarajah P, Gorell ES, Sum K, Yekrang K, Phung M, et al. Evaluation of antipruritic effects of serlopitant, a neurokinin 1 receptor antagonist, in patients with epidermolysis bullosa: A phase 2 randomized controlled trial. J Eur Acad Dermatol Venereol 2025; 39: e215–e217. DOI: https://doi.org/10.1111/jdv.20189

Published

2026-01-21

How to Cite

Okata-Karigane, U., Gorell, E. S., Pathmarajah, P., Li, S., & Chiou, A. S. (2026). Patient-reported Itch Outcome Measures for Chronic Pruritus in Dystrophic Epidermolysis Bullosa: Exploratory Analysis of a Phase 2 Randomized Controlled Trial. Acta Dermato-Venereologica, 106, adv–2025. https://doi.org/10.2340/actadv.v106.adv-2025-0139