Caregivers' role in managing hereditary angioedema and perceptions of treatment-related burden.
Allergy Asthma Proc
; 42(3): S11-S16, 2021 05 01.
Article
em En
| MEDLINE
| ID: mdl-33980328
ABSTRACT
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.
Texto completo:
1
Base de dados:
MEDLINE
Assunto principal:
Cuidadores
/
Angioedemas Hereditários
Tipo de estudo:
Diagnostic_studies
/
Prognostic_studies
/
Qualitative_research
Limite:
Humans
País como assunto:
America do norte
Idioma:
En
Ano de publicação:
2021
Tipo de documento:
Article