Measuring the impact of pruritus in patients with epidermolysis bullosa: evaluation with an itch-specific instrument

Ashjan Alheggi; Raneem Alnutaifi; Manal Alkhonezan; Norah Almudawi; Renad Alsuhaibani; Philip Moons; Turki Aljuhani

doi:10.4081/dr.2023.9700

Authors

Ashjan Alheggi
aialheggi@imamu.edu.sa
Department of Dermatology, College of Medicine, Imam Mohammad Ibn Saud Islamic University, Riyadh, Saudi Arabia. https://orcid.org/0000-0002-4869-4684
Raneem Alnutaifi College of Medicine, Imam Mohammad Ibn Saud Islamic University, Riyadh, Saudi Arabia. https://orcid.org/0009-0004-7443-2938
Manal Alkhonezan College of Medicine, Imam Mohammad Ibn Saud Islamic University, Riyadh, Saudi Arabia. https://orcid.org/0009-0002-4594-2619
Norah Almudawi College of Medicine, Imam Mohammad Ibn Saud Islamic University, Riyadh, Saudi Arabia.
Renad Alsuhaibani College of Medicine, Imam Mohammad Ibn Saud Islamic University, Riyadh, Saudi Arabia.
Philip Moons KU Leuven Department of Public Health and Primary Care, KU Leuven, Belgium.
Turki Aljuhani Department of Dermatology, King Fahad University Hospital, Khober, Saudi Arabia. https://orcid.org/0000-0001-9328-2075

Pruritus is one of the most debilitating symptoms for patients with epidermolysis bullosa (EB). This study aimed to assess the burden of itch and to address its dimensions across patients with EB. Forty-six patients with EB were recruited from the Saudi EB registry to participate. All participants completed the Leuven Itch Scale. The sample included 5 patients with EB simplex (EBS), 3 with junctional EB (JEB), 34 with dystrophic EB (DEB), and 4 patients had unknown type. Overall, 97.8% patients reported itch. In patients with itch, 73.3% reported that it was often or always present, longer than 2h Itch episodes was reported by JEB (66.7%) and recessive DEB (RDEB) (3.2%). Itch, in all its dimensions, was worst in patients with JEB and DEB than EBS. Itch occurred mostly in a hot environment (80%), when sweating (71.1%), in healing wounds (40%), and during dressing change (35.6%) whereas cold environment resulted in itch in only (2.2%). The burden of pruritus increased with increasing age. This study highlights a challenging area in EB care with a need for specific treatments.

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Philip Moons, KU Leuven Department of Public Health and Primary Care, KU Leuven

Institute of Health and Care Sciences, University of Gothenburg, Sweden

Alheggi, A., Alnutaifi, R., Alkhonezan, M., Almudawi, N., Alsuhaibani, R., Moons, P., & Aljuhani, T. (2023). Measuring the impact of pruritus in patients with epidermolysis bullosa: evaluation with an itch-specific instrument. Dermatology Reports, 15(4). https://doi.org/10.4081/dr.2023.9700