Assessment of disease burden among moderate to severe pediatric psoriasis patients and their caregivers: A real-world survey in the United States

Background: Psoriasis (PsO) is a chronic inflammatory skin condition characterized by itchiness, pain, and sleep disturbance-related fatigue. Pediatric PsO has a prevalence of 128 cases per 100,000 individuals in the United States, but comprehensive data on the burden patients and caregivers face are lacking. Objective: To describe the real-world clinical burden of PsO in adolescents (12–17 y), preadolescents (6–11 y), and caregivers of preadolescents. Study Design: Data were drawn from the Adelphi Real World Pediatric PsO Disease Specific Programme, a cross-sectional survey of physicians and their pediatric patients with PsO in the United States from December 2019 to April 2020. Physicians reported patient demographics and clinical characteristics for 10 consecutively consulting patients. Patients or their caregivers (for preadolescent patients) reported disease impact and treatment satisfaction. Analyses were descriptive. Results: Overall, 96 physicians reported data for 288 moderate-to-severe patients (173 adolescents, 115 preadolescents); moderate-to-severe was defined by physician subjective assessment, patients with body surface area (BSA) >3%, or patients with BSA ≤3% who had challenging regions affected. Mean (SD) age for adolescents was 15.1 (1.6) years, and 58% were male. For preadolescents, this was 9.3 (1.6) years, and 54% were male. Altogether, 173 adolescent patients and 115 caregivers reported data. PsO affected sleep in 64% of adolescents, 68% of preadolescent patients, and 56% of caregivers. School absenteeism was reported in 19% of adolescents, and 46% of caregivers experienced emotional distress. Most adolescents (61%) and preadolescents (91%) were prescribed topical/phototherapy only. Among dissatisfied adolescents (33%), 69% were on topical/phototherapy alone; among dissatisfied caregivers (n = 39), 92% reported their child received topical/phototherapy only. Conclusion: Pediatric PsO is associated with a burden to both patients and their caregivers. Although topical and phototherapy treatments are commonly used, there is a need for more effective options to improve quality of life and treatment satisfaction for these patients.