@article{45e8d303ac8c4a2da80af9819a1ee5bd,
title = "Caregivers{\textquoteright} role in managing hereditary angioedema and perceptions of treatment-related burden",
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.",
author = "Craig, {Timothy J.} and Aleena Banerji and Riedl, {Marc A.} and Best, {Jessica M.} and Jinky Rosselli and Rebecca Hahn and Cristine Radojicic",
note = "Funding Information: From the 1Department of Medicine and Pediatrics, Penn State University, Hershey Medical Center, Hershey, Pennsylvania; 2Allergy and Immunology, Department of Medicine, Massachusetts General Hospital, Boston, Massachusetts; 3Division of Rheumatology, Allergy, and Immunology, Department of Medicine, University of California, San Diego, La Jolla, California; 4BioCryst Pharmaceuticals, Inc., Durham, North Carolina; 5KJT Group, Inc., Honeoye Falls, New York; and 6Department of Medicine, Duke University School of Medicine, Durham, North Carolina T. Craig has received research funding from BioCryst, CSL Behring, Takeda, and Ionis; speaker fees from CSL Behring and Takeda; and consulting fees from BioCryst, CSL Behring, Takeda, and Pharming. A. Banerji has received research funding from Takeda and BioCryst, and consulting fees from Takeda, BioCryst, CSL Behring, Pharming, KalVista, and Pharvaris. M. Riedl has been a consultant or speaker for or has received grants from Adverum, Attune, BioCryst, BioMarin, CSL Behring, Ionis, KalVista, Pfizer, Pharming, Pharvaris, REGENXBIO, and Shire/Takeda. C. Radojicic has received consulting fees from BioCryst and CSL Behring, and speaker fees from CSL Behring. J. Best and J. Rosselli are employed by BioCryst. R. Hahn is an employee of KJT Group, Inc., which received funding for conducting the research study on which the manuscript is based This study was deemed exempt by the Western Institutional Review Board and funded by BioCryst Pharmaceuticals, Inc. Writing support was provided by Ashly Pavlovsky, Ph.D., from Porterhouse Medical Group Address correspondence to Timothy J. Craig, D.O., Department of Medicine and Pediatrics, Penn State University, Hershey Medical Center, 500 University Dr, Hershey, PA 17033 E-mail address: tcraig@pennstatehealth.psu.edu Copyright {\textcopyright} 2021, OceanSide Publications, Inc., U.S.A. Publisher Copyright: Copyright {\textcopyright} 2021, OceanSide Publications, Inc., U.S.A.",
year = "2021",
month = may,
day = "1",
doi = "10.2500/aap.2021.42.210029",
language = "English (US)",
volume = "42",
pages = "S11--S16",
journal = "Allergy and Asthma Proceedings",
issn = "1088-5412",
publisher = "OceanSide Publications Inc.",
}