TY - JOUR
T1 - Physician and patient perspectives on the management of hereditary angioedema
T2 - A survey on treatment burden and needs
AU - Riedl, Marc A.
AU - Craig, Timothy J.
AU - Banerji, Aleena
AU - Aggarwal, Kavita
AU - Best, Jessica M.
AU - Rosselli, Jinky
AU - Hahn, Rebecca
AU - Radojicic, Cristine
N1 - Funding Information:
From the 1Division of Rheumatology, Allergy, and Immunology, Department of Medicine, University of California, San Diego, La Jolla, California; 2Department of Medicine and Pediatrics, Penn State University, Hershey Medical Center, Hershey, Pennsylvania; 3Allergy and Immunology, Department of Medicine, Massachusetts General Hospital, Boston, Massachusetts; 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 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. T. Craig has received research funding from BioCryst, CSL Behring, Takeda, and Ionis; and 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. C. Radojicic has received consulting fees from BioCryst and CSL Behring, and speaker fees from CSL Behring. K. Aggarwal, 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 was funded by BioCryst Pharmaceuticals, Inc. Writing support was provided by Natasha Daoud, M.B.Ch.B., and Ashly Pavlovsky, Ph.D., from Porterhouse Medical Group Address correspondence to Marc A. Riedl, M.D., Division of Rheumatology, Allergy, and Immunology, Department of Medicine, UC San Diego Health, 8899 University Center Lane, Suite 230 San Diego, CA 92122 E-mail address: mriedl@health.ucsd.edu Copyright © 2021, OceanSide Publications, Inc., U.S.A.
Publisher Copyright:
© 2021, OceanSide Publications, Inc., U.S.A.
PY - 2021/5/1
Y1 - 2021/5/1
N2 - Hereditary angioedema (HAE) is a rare disorder caused by genetic mutations that lead to recurrent episodes of swelling in various parts of the body. Prophylactic treatment is common for patients with HAE, and the therapeutic options have expanded in recent years. The current standard of care for prophylactic HAE therapies is subcutaneous treatment, which can be self-administered at home, greatly improving patient quality of life. As new therapies emerge, it is important for patients and physicians to discuss the risks and benefits associated with each treatment to develop an individualized approach to HAE management. We conducted surveys of patients with HAE and physicians who treat patients with HAE to identify prescribing trends for prophylactic HAE treatments and the impact that such treatments has on patients. Our results confirmed that newer, subcutaneous therapies are prescribed for HAE prophylaxis more frequently than other therapies in the United States and that treatment burdens still exist for patients with HAE. We found that physicians and patients were not always aligned on how treatment choices affect patients' lives, which may mean that there are opportunities for enhanced patient-physician dialog and shared decision-making in HAE management in the United States.
AB - Hereditary angioedema (HAE) is a rare disorder caused by genetic mutations that lead to recurrent episodes of swelling in various parts of the body. Prophylactic treatment is common for patients with HAE, and the therapeutic options have expanded in recent years. The current standard of care for prophylactic HAE therapies is subcutaneous treatment, which can be self-administered at home, greatly improving patient quality of life. As new therapies emerge, it is important for patients and physicians to discuss the risks and benefits associated with each treatment to develop an individualized approach to HAE management. We conducted surveys of patients with HAE and physicians who treat patients with HAE to identify prescribing trends for prophylactic HAE treatments and the impact that such treatments has on patients. Our results confirmed that newer, subcutaneous therapies are prescribed for HAE prophylaxis more frequently than other therapies in the United States and that treatment burdens still exist for patients with HAE. We found that physicians and patients were not always aligned on how treatment choices affect patients' lives, which may mean that there are opportunities for enhanced patient-physician dialog and shared decision-making in HAE management in the United States.
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U2 - 10.2500/AAP.2021.42.210017
DO - 10.2500/AAP.2021.42.210017
M3 - Review article
C2 - 33980329
AN - SCOPUS:85105838213
VL - 42
SP - S17-S25
JO - New England and regional allergy proceedings
JF - New England and regional allergy proceedings
SN - 1088-5412
IS - 3
ER -