# 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.

## Key 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.