Burden of hereditary angioedema: results from a multinational survey of caregivers for adult and pediatric patients

TL;DR

This study shows how caring for people with hereditary angioedema affects caregivers' lives, including work, sleep, and emotional health.

Contribution

The study is the first to document the psychosocial and humanistic burden on caregivers of both adult and pediatric HAE patients across multiple countries.

Findings

Caregivers of pediatric patients reported significant impacts on work, sleep, and household responsibilities.

Emotional stress, including anxiety and sleep problems, was common among caregivers of both adult and pediatric HAE patients.

Caregivers often faced a lack of understanding from schools, employers, and friends regarding their caregiving duties.

Abstract

Hereditary angioedema (HAE), a rare autosomal dominant disorder characterized by recurrent, potentially life-threatening attacks of cutaneous or submucosal swelling, affects patients’ everyday activities and psychological well-being. Although caregivers are instrumental in helping patients cope with HAE, its impact on the caregivers’ quality of life is poorly documented. Using web-based surveys (July 2022‒February 2023), this international study (Argentina, Brazil, Colombia, Croatia, Denmark, Germany, Hungary, Ireland, Norway, Poland, Portugal, Romania, and Sweden) assessed the humanistic and psychosocial burden of caregivers (≥ 18 years old) of pediatric (< 18 years) and adult (≥ 18 years) patients with diagnosed HAE.

In total, 120 caregivers completed the surveys: 54 caregivers of pediatric patients (CoPs; mean age 40.6 years; 79.6% female) and 66 caregivers of adult patients (CoAs; mean age 42.7 years; 48.5% female). CoPs and CoAs reported 5.6 and 13.1 HAE attacks (mean) in the past 6 months for individuals receiving their care, respectively. CoPs provided care for 23.5 days (mean) per month on average; in the past 4 weeks, CoPs missed (mean) 2.6 days (mean) of work, while the children missed 3.9 days (mean) of school. CoPs cited a lack of understanding of their caregiving duties from schools (20.4%), employers/coworkers (16.7%), family (13.0%), friends (13.0%), and partner/spouse (13.0%). CoPs reported impacts on their work (37.0%), sleep (37.0%), and household chores (31.5%), and restricted time with family (29.6%), spouses/partners (27.8%), and friends (24.1%). Emotional impacts on the CoPs included worry about the child’s health (90.7%) and future (68.5%); CoPs themselves reported having sleep problems (24.1%), migraine (22.2%), gastrointestinal disorders (22.2%), and anxiety (20.4%). CoAs reported impacts on their work (28.8%), sleep (28.8%), and recreational activities (27.3%), leading to missing time of work (mean 0.94 days in past 4 weeks). Emotional impacts on the CoAs included worry about the health of individual they provide care for (92.4%) and future (40.9%); CoAs themselves reported having anxiety (13.6%), migraines (13.6%), and sleep problems (12.1%).

Results of this caregiver survey revealed that the caregiver role in HAE is time-demanding and adversely impacts various aspects of the caregiver’s life, particularly their emotional wellbeing.

The online version contains supplementary material available at 10.1186/s13023-025-04123-2.

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