Family quality-of-life burden in chronic spontaneous urticaria: A multicentre study

J Eur Acad Dermatol Venereol. 2026 Jan 5. doi: 10.1111/jdv.70290. Online ahead of print.

Abstract

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.

Keywords: chronic spontaneous urticaria; family relations; health expenditures; health status indicators; health‐related quality of life; omalizumab; quality of life; sickness impact profile; skin disease; urticariaantihistamines.

Plain language summary

Chronic spontaneous urticaria (CSU) is a skin condition that causes itchy hives, swelling and discomfort lasting more than 6 weeks. It affects up to 1% of people worldwide, especially women aged 30–50. Although not life‐threatening, it can severely impact daily life and emotional well‐being. This international cross‐sectional study was conducted in 12 countries across three continents, from January to December 2024 at Urticaria Centres of Reference and Excellence (UCARE). The study aimed to investigate how CSU affects the family members of patients, focusing on emotional, physical, social and financial impacts. A total of 1187 CSU patients and their respective family members completed questionnaires, including the Family Dermatology Life Quality Index (FDLQI), and physicians also provided clinical data on disease severity and control. Results showed that uncontrolled CSU was linked to more household responsibilities and emotional stress for family members, often disrupting their work and personal routines. In contrast, strong family support and effective treatment were associated with lower family burden. Early diagnosis, appropriate treatment and continuous follow‐up can reduce this burden and improve quality of life for both patients and their families.