Research Information System
Journal of the European Academy of Dermatology and Venereology, 2026 (SCI-Expanded, Scopus)
Background: Chronic spontaneous urticaria (CSU) can cause psychosocial and quality of life burden on patients and their family members and caregivers. Despite its recognition as a debilitating disease, limited data exist regarding the impact of CSU on family members, hindering a comprehensive understanding of the disease's broader effects. This study aimed to assess how CSU affects the quality of life of family members who support patients in their daily challenges by applying the Family Dermatology Life Quality Index (FDLQI) questionnaire across multiple countries. Methods: A cross-sectional, multicentre and international study conducted between January and December 2024 in Urticaria Centres of Reference and Excellence (UCARE) centres located in several countries including Brazil, China, Ecuador, Greece, India, Oman, Poland, Russia, Thailand, Turkey, Peru and North Macedonia. Statistical analyses, including non-parametric tests and multiple regression models, were employed to explore associations between disease severity/control and family burden. Results: Poorly controlled CSU significantly deteriorated family members' quality of life, particularly in emotional, physical and social domains. Higher disease severity and lower disease control scores were associated with increased stress, greater caregiving burden and elevated health expenditures. In opposition to family relations, older age and longer time since diagnosis mitigate negative impacts, while insufficient treatment regimens exacerbated them. Conclusion: Inadequate control of CSU amplifies the burden on families, underscoring the need for effective and supportive care strategies.