Abstract

Background: Prurigo nodularis (PN) is a rare dermatosis characterized by intensely pruritic nodules. The highest prevalence rate is approximately 72 per 100,000 people and without FDA-approved therapies, PN presents as a challenge to both patients and providers. Methods: An anonymous, online Qualtrics survey was developed and delivered to three international PN support groups from July to September 2021. The survey assessed patient treatment practices, the use of online resources, and quality of life (QoL) using Skindex-16. Results: A total of 94 patients completed the survey and met inclusion criteria. Respondents were largely female (89.4%) with a mean (SD) age of 53.7 (12.9) years. The mean number of prescription medications used was 5.36 (3.5) with topical steroids being the most common (66%). The mean number of over-the-counter (OTC) medications was 3.2 (2.8). Despite using multiple medications, respondents experienced moderate-to-severe itch based on the worst-itch numeric rating scale (6.6 ± 2.5). The majority of respondents (96.8%) used online resources for PN education and felt a positive impact on their OTC medications (51.7%). PN patients’ mean ± SD Skindex-16 subscale score was 71.5 ± 26.3, 84.5 ± 20.7, and 67.0 ± 29.1 in the symptoms, emotions and functioning domain, respectively. Each subscale score was significantly higher than those reported for eczematous dermatitis (symptoms: 42 ± 31; emotions: 52 ± 30; functioning: 24 ± 29) and psoriasis (symptoms: 49 ± 29; emotions: 68 ± 25; functioning: 39 ± 33) representing a higher disruption in QoL. Conclusions: Despite the use of multiple medications, PN patients experience moderate-to-severe pruritus and decreased QoL. Online platforms are frequently used by patients and may be used to improve awareness regarding effective treatments.

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