Family Quality of Life Burden in CSU Increased by Lack of Disease Control

A lack of adequate control of chronic spontaneous urticaria (CSU) can amplify the burden on families of patients, recent findings suggest, highlighting the value of care strategies.1

A recently-published study yielded these findings on CSU and its effect on quality of life (QoL), and the data were authored by such investigators as Beatrice Martinez Zugaib Abdalla, MD, from Centro Universitário Faculdade de Medicina do ABC in Brazil. Abdalla and coauthors noted, despite CSU’s debilitating nature as a dermatologic disease, there had been limited data on the condition’s impact on caregivers.2

To address this dearth of information, Abdalla and colleagues the Family Dermatology Life Quality Index (FDLQI), a validated instrument for evaluating the effects of dermatologic diseases.

“This study aims to employ the FDLQI questionnaire to evaluate how CSU affects families of patients on their relationships, their emotional, physical, social and economic burden, as well as involvement in daily disease management across several countries,” the investigators wrote.1

Design and Background

The investigators set out to use the FDLQI questionnaire to highlight key aspects of family QoL burden. Examples included the demands of patient caregiving, episodes of emotional distress, the effects of chronic itch, and the unpredictability of CSU on the family.

To conduct their research, Abdalla et al carried out this international, multicenter, cross-sectional study within sites belonging to the Urticaria Centres of Reference and Excellence (UCARE) network, doing so between January - December 2024. Those deemed eligible to be participants were relatives or caregivers living within the same household as individuals with a confirmed CSU diagnosis. These patients would have been given routine care at participating UCARE centers.

All of those involved provided their own written informed consent prior to recruitment in the analysis. Abdalla and colleagues’ criteria for participant inclusion required such individuals to live with patients, to be at least 18 years old, and to be able to read and understand the consent documents and surveys in their native language.

Information was gathered by the investigative team via self-completed questionnaires. These were provided to and filled out by family members. The team also looked at clinical data reported by the clinicians managing the individuals located at each site. There were a set of 10 items included on the study questionnaire asking about demographic qualities, as well as the FDLQI.

The FDLQI includes 10 questions designed to evaluate how a skin condition can impact close family members’ QoL. FDLQI scores range between 0 - 30, with higher values indicating a greater level of life quality impairment. In order to determine the patients’ disease status, clinicians filled out 2 established assessment tools: the Urticaria Activity Score over the course of 7 days (UAS7), measuring CSU severity levels, and the Urticaria Control Test (UCT), which looks at disease control among patients.

Participating centers were located in China, Brazil, Ecuador, India, Oman, Greece, Poland, Russia, Turkey, Thailand, Peru, and North Macedonia. Abdalla et al captured data from varied populations across 3 continents. Their statistical evaluation also included non-parametric analyses and regression modeling, with the investigators seeking to further assess the relationship between CSU severity and control and the associated QoL burdens.

Burden on Family of Patients with CSU

Overall, Abdalla and colleagues’ findings suggest inadequate control of CSU was linked with a marked decline in family members’ QoL.1 They highlighted several notable impacts on physical functioning, emotional well-being, and participation in different social activities. Notably, the study showed greater CSU activity and poorer disease control were linked to increased levels of stress among caregivers.

This raised demands on such individuals, and higher out-of-pocket healthcare costs were also noted in the study.1 Abdalla and coauthors pointed to older age of family members and to longer duration since the patient’s diagnosis as 2 variables which lessened the negative effects on family QoL. In contrast, suboptimal or insufficient approaches to treatment were shown to be linked with a worsening of such burdens.

“To conclude, this study highlights that CSU significantly burdens not only patients but also their families,” the team wrote.1 “The link between poor disease control and greater family impact emphasizes the need for effective, patient-centred treatments. Integrating family support and health education into care strategies is essential to improve QoL across the household.”

References

1. Abdalla BMZ, Criado RFJ, Criado PR, et al. 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. Epub ahead of print. PMID: 41487050.

2. Meeuwesen L, van den Brink-Muinen A, Hofstede G. Can dimensions of national culture predict cross-national differences in medical communication? Patient Educ Couns. 2009 Apr;75(1):58-66. doi: 10.1016/j.pec.2008.09.015. Epub 2008 Nov 13. PMID: 19013047.