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

ABSTRACT:

Background

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.

Results

In total, 120 caregivers completed th

SUBMITTER: Watt M 

PROVIDER: S-EPMC12895942 | biostudies-literature | 2026 Feb

REPOSITORIES: biostudies-literature