Caregivers' role in managing hereditary angioedema and perceptions of treatment-related burden.

Journal Article (Journal Article)

Hereditary angioedema (HAE) is a rare genetic disease that results in recurrent, debilitating, and potentially life-threatening swelling episodes in the extremities, genitals, gastrointestinal tract, and upper airway. Patients can experience significant burdens related to their disease. Informal or familial caregivers often support patients with HAE and likely share in the disease-related burdens, although there are limited HAE caregiver-focused reports in the scientific literature. In the United States, we conducted an online survey of adults caring for an individual with HAE to better understand their experiences with the disease and identify psychosocial impacts of providing care for a patient with HAE. Thirty caregivers provided responses to the survey. Most caregivers were family members of the care recipient and many had HAE themselves. Caregivers reported participating in a number of medical-related tasks and experiencing some burdens as a result of caring for a person with HAE.

Full Text

Duke Authors

Cited Authors

  • Craig, TJ; Banerji, A; Riedl, MA; Best, JM; Rosselli, J; Hahn, R; Radojicic, C

Published Date

  • May 1, 2021

Published In

Volume / Issue

  • 42 / 3

Start / End Page

  • S11 - S16

PubMed ID

  • 33980328

Electronic International Standard Serial Number (EISSN)

  • 1539-6304

Digital Object Identifier (DOI)

  • 10.2500/aap.2021.42.210029


  • eng

Conference Location

  • United States