Abstract Generalized pustular psoriasis (GPP) is a heterogeneous, systemic, neutrophilic, inflammatory disease with chronic symptoms and periods of flaring that negatively impact a patient’s quality of life (QoL). The goal of the international, non-interventional SCRIPTOR study is to understand the clinical burden of GPP, including flare frequency, treatment patterns and healthcare resource utilization. Between December 2022 and May 2023, data were collected from five dermatology centres in the UK using medical charts of patients diagnosed with GPP (2011 onwards). Patients diagnosed with acute generalized exanthematous pustulosis without a history of GPP were not included. Twenty-seven patients (n = 18; 67% female), with a mean [standard deviation (SD)] age at GPP diagnosis of 53.1 (19.7) years (range: 18.0–86.0 years) were included. Most patients were Caucasian (n = 21; 78%), followed by Asian (n = 4; 15%) and mixed/unknown ethnicity (n = 2; 7%). Most patients (74%) had ≥1 GPP risk factor, the most common being a previous diagnosis of plaque psoriasis (plaque PsO; 65%), medication use (55%) and comorbidities (50%). Common comorbidities were plaque PsO (58%), hypertension (46%) and psychiatric conditions (29%). Diagnosis of GPP predominantly occurred in an inpatient setting (74%), with guideline diagnostic criteria used in ∼80% of cases. At GPP diagnosis, 95% of patients had pustules. Prior to diagnosis of GPP, seven patients (26%) had a flare. Among patients with a follow-up duration of ≥1 year (n = 13), mean (SD) flare episodes per year was 0.9 (0.6). GPP flare triggers (infections and medication use/withdrawal) were documented in six patients (43% of post-diagnosis cases). Physical examination and laboratory testing were commonly used in the assessment of GPP flares. Psoriasis area and severity index and dermatology life quality index were used in ∼30% of routine follow-ups and ∼20% of documented flare cases. At diagnosis, there were 17 all-cause (median/mean duration: 17.0/22.1 days) and 3 flare-related (27.0/29.0 days) hospitalizations documented. Post-diagnosis, 11 patients had ≥1 hospital/emergency room admission due to: GPP flare (n = 14, 74%), complications, comorbidity management and adverse events (n = 3, 16% each). The most prescribed medications for flare treatment (n = 39) were topical corticosteroids (n = 9), retinoids (n = 7), methotrexate and ciclosporin (n = 4 each). Methotrexate (n = 23), retinoids (n = 14) and ciclosporin (n = 8) were often prescribed for long-term treatment (n = 74). From pre-diagnosis onwards, GPP exerts a significant burden, with recurrent flare episodes, hospitalizations and complications. The use of guideline diagnostic criteria varies, and disease severity and QoL assessment tools are underutilized. There are different approaches used for the treatment of GPP flares and long-term treatment. Overall, these findings emphasize the need for continuous treatment and comprehensive guidelines for GPP in the UK.
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