A qualitative exploration of the experiences of itch for adults living with epidermolysis bullosa
Isabella de Vere Hunt, Meghan C. Halley, Katie Sum, Kiana Yekrang, Michelle Phung, Julie Good, Eleni Linos, Albert S. Chiou
Abstract
Dear Editor, Epidermolysis bullosa (EB) refers to a group of rare genetic skin disorders characterized by skin fragility and blistering caused by mutations in keratin, laminin or collagen genes. Itch is consistently reported as the most distressing disease‐related symptom in EB, ranking higher than pain, swallowing and gastrointestinal issues and infections.1, 2 The use of sensitive patient‐reported outcome measures to assess symptom burden is important in existing management, development of new treatment options, monitoring of disease burden and evaluation of treatment response. Itch has a number of unique features in the context of EB because of extreme skin fragility and an itch–scratch–blister cycle that worsens skin injury,3 which is not captured by existing itch measurements. To improve how we assess itch burden for these patients, we sought to explore the nature of itch for patients living with EB and identify features that patients highlight as important to their experience. M.H., K.S. and K.Y. conducted six in‐depth, semistructured interviews (between July 2020 and November 2020) with adults with EB, focusing on their experience of itch. Using a constant comparison and mind‐mapping approach, we conducted an inductive thematic analysis of the full interview transcripts.4 This study was approved by the Stanford Institutional Review Board.