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Introduction <p>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.</p> Methods <p>Patients (aged 18–65 years) with a confirmed diagnosis of GPP (&gt; 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).</p> Results <p>A total of 18 patients (female, <i>n</i> = 15) participated in the study (USA, <i>n</i> = 7; Germany, <i>n</i> = 4; China, <i>n</i> = 4; and Japan, <i>n</i> = 3). Comorbidities included plaque psoriasis (<i>n</i> = 5), psoriatic arthritis (<i>n</i> = 3), and palmoplantar pustulosis (<i>n</i> = 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&#xa0;(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.</p> Conclusion <p>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.</p>

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

  • 期刊论文

  • 出版模式：

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  • 发表日期：

    2025年8月7日

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  • Lauren C. S. Kole,
  • Yayoi Tada,
  • Sascha Gerdes,
  • Alice B. Gottlieb,
  • Matthias Augustin,
  • Min Zheng,
  • Hideaki Miyachi,
  • Iris Chen-Yin Lai,
  • S. Renée Marshall,
  • Smita Jha,
  • Ferhal Küçükosman,
  • Gang Wang

摘要

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.