A Global Assessment of Patient Experience and Quality of Life in Generalized Pustular Psoriasis: Results from Interviews and Online Surveys

Introduction: Generalized pustular psoriasis (GPP) is a chronic, systemic, neutrophilic inflammatory disease that significantly impacts patients’ quality of life (QoL). A multinational panel of patients with GPP participated in surveys and interviews, with the aim to assess the impact of chronic symptoms and GPP flares on QoL and well-being, and to better understand the resources and support that patients need. Methods: Patients (aged 18–65 years) with a confirmed diagnosis of GPP (> 1 month), who had experienced ≥ 1 flare in the past year and were receiving active treatment for GPP were recruited through databases and healthcare professionals (HCPs). Results: A total of 18 patients (female, n = 15) participated in the study (USA, n = 7; Germany, n = 4; China, n = 4; and Japan, n = 3). Comorbidities included plaque psoriasis (n = 5), psoriatic arthritis (n = 3), and palmoplantar pustulosis (n = 1). Most patients (94%) were receiving active treatment for GPP, including biologics, immunosuppressants (non-biologic), retinoids, and steroids. Itchiness was the most prevalent symptom (82%), followed by dryness (75%), erythema (70%), and fatigue (65%). The scalp, arms, and palms of hands were the most affected areas. Most patients interviewed (80%) reported chronic symptoms, with itchy and dry skin and joint pain being the most frequent. Dermatology Life Quality Index scores indicated a moderate to extremely large impact on QoL in nine patients (50%). Chronic symptoms significantly impacted activities of daily life in 60% of patients. Chronic symptoms and flares negatively affected the psychological well-being of patients (mean General Health Questionnaire-12 score: 15 and 17, respectively). Patients employed self-care strategies, painkillers, and dietary modifications to manage symptoms, sometimes under the guidance of HCPs. Conclusion: This study highlights the impact of GPP on patients’ QoL and physical and psychological well-being, due to chronic symptoms that persist despite current treatments. It emphasizes the need for continuous treatment of GPP and the importance of additional resources and support networks for patients.