TY - JOUR
T1 - Hereditary angioedema from the patient's perspective
T2 - A follow-up patient survey
AU - Banerji, Aleena
AU - Li, Yu
AU - Busse, Paula
AU - Riedl, Marc A.
AU - Holtzman, Nicole S.
AU - Li, Huamin Henry
AU - Davis-Lorton, Mark
AU - Bernstein, Jonathan A.
AU - Frank, Michael
AU - Castaldo, Anthony J.
AU - Long, Janet
AU - Zuraw, Bruce
AU - Lumry, William
AU - Christiansen, Sandra
N1 - Publisher Copyright:
Copyright © 2018, OceanSide Publications, Inc., U.S.A.
PY - 2018/5/1
Y1 - 2018/5/1
N2 - Background: We conducted our first patient survey at the 2013 hereditary angioedema (HAE) patient summit and learned that, despite several novel therapies, the burden of disease was high. Objective: To determine, from the patient's perspective, if any improvements in the current state of HAE care occurred over a two-year period between HAE patient summits. Methods: A patient survey was conducted at the 2015 Hereditary Angioedema Association conference by using paper surveys that aimed at understanding the current state of HAE care. Questions included patient characteristics, burden of disease, and satisfaction with care and treatment options. Comparisons between patients with HAE with C1-inhibitor (HAE-C1INH) and patients with HAE with normal C1-inhibitor (HAE-nlC1INH), as well as between patients with HAE in 2013 and 2015, were performed by using Χ2 tests. Results: There were 232 surveys distributed, and 143 surveys were identified as complete for inclusion and analysis from patients with self-reported HAE. Most patients had type I or type II HAE (67.5% [n = 106]), with a smaller number of patients with HAE-nlC1INH (23.6% [n = 37]). In 2015, almost half of the patients with HAE-C1INH (47.1%) and 56.7% of the patients with HAE-nlC1INH experienced a delay of ≥10 years between initial symptoms and diagnosis. Among the patients with HAE-C1INH, 25% reported one or more attacks per week and another 48% reported experiencing one or more attacks per month (fewer than one attack per week). The patients with HAE-nlC1INH reported attacks more frequently than did the patients with HAE-C1INH (p = 0.002), with 59.5% who reported attacks at least once a week. Emergency care was reported one or more times per month in 5% of the patients with HAE-C1INH and in 24.3% of the patients with HAE-nlC1INH. Conclusion: Similar to 2013, although significant progress has been made, there is still a high burden of disease that faces patients with HAE.
AB - Background: We conducted our first patient survey at the 2013 hereditary angioedema (HAE) patient summit and learned that, despite several novel therapies, the burden of disease was high. Objective: To determine, from the patient's perspective, if any improvements in the current state of HAE care occurred over a two-year period between HAE patient summits. Methods: A patient survey was conducted at the 2015 Hereditary Angioedema Association conference by using paper surveys that aimed at understanding the current state of HAE care. Questions included patient characteristics, burden of disease, and satisfaction with care and treatment options. Comparisons between patients with HAE with C1-inhibitor (HAE-C1INH) and patients with HAE with normal C1-inhibitor (HAE-nlC1INH), as well as between patients with HAE in 2013 and 2015, were performed by using Χ2 tests. Results: There were 232 surveys distributed, and 143 surveys were identified as complete for inclusion and analysis from patients with self-reported HAE. Most patients had type I or type II HAE (67.5% [n = 106]), with a smaller number of patients with HAE-nlC1INH (23.6% [n = 37]). In 2015, almost half of the patients with HAE-C1INH (47.1%) and 56.7% of the patients with HAE-nlC1INH experienced a delay of ≥10 years between initial symptoms and diagnosis. Among the patients with HAE-C1INH, 25% reported one or more attacks per week and another 48% reported experiencing one or more attacks per month (fewer than one attack per week). The patients with HAE-nlC1INH reported attacks more frequently than did the patients with HAE-C1INH (p = 0.002), with 59.5% who reported attacks at least once a week. Emergency care was reported one or more times per month in 5% of the patients with HAE-C1INH and in 24.3% of the patients with HAE-nlC1INH. Conclusion: Similar to 2013, although significant progress has been made, there is still a high burden of disease that faces patients with HAE.
UR - http://www.scopus.com/inward/record.url?scp=85046761761&partnerID=8YFLogxK
U2 - 10.2500/aap.2018.39.4123
DO - 10.2500/aap.2018.39.4123
M3 - Review article
C2 - 29669666
AN - SCOPUS:85046761761
SN - 1088-5412
VL - 39
SP - 212
EP - 223
JO - Allergy and Asthma Proceedings
JF - Allergy and Asthma Proceedings
IS - 3
ER -