Hereditary angioedema from the patient's perspective

A follow-up patient survey

Aleena Banerji, Yu Li, Paula Busse, Marc A. Riedl, Nicole S. Holtzman, Huamin Li, Mark Davis-Lorton, Jonathan A. Bernstein, Michael Frank, Anthony J. Castaldo, Janet Long, Bruce Zuraw, William Lumry, Sandra Christiansen

Research output: Contribution to journalReview article

Abstract

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.

Original languageEnglish (US)
Pages (from-to)212-223
Number of pages12
JournalAllergy and Asthma Proceedings
Volume39
Issue number3
DOIs
StatePublished - May 1 2018
Externally publishedYes

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Hereditary Angioedemas
Surveys and Questionnaires
Hereditary Angioedema Types I and II

ASJC Scopus subject areas

  • Immunology and Allergy
  • Pulmonary and Respiratory Medicine

Cite this

Banerji, A., Li, Y., Busse, P., Riedl, M. A., Holtzman, N. S., Li, H., ... Christiansen, S. (2018). Hereditary angioedema from the patient's perspective: A follow-up patient survey. Allergy and Asthma Proceedings, 39(3), 212-223. https://doi.org/10.2500/aap.2018.39.4123

Hereditary angioedema from the patient's perspective : A follow-up patient survey. / Banerji, Aleena; Li, Yu; Busse, Paula; Riedl, Marc A.; Holtzman, Nicole S.; Li, Huamin; Davis-Lorton, Mark; Bernstein, Jonathan A.; Frank, Michael; Castaldo, Anthony J.; Long, Janet; Zuraw, Bruce; Lumry, William; Christiansen, Sandra.

In: Allergy and Asthma Proceedings, Vol. 39, No. 3, 01.05.2018, p. 212-223.

Research output: Contribution to journalReview article

Banerji, A, Li, Y, Busse, P, Riedl, MA, Holtzman, NS, Li, H, Davis-Lorton, M, Bernstein, JA, Frank, M, Castaldo, AJ, Long, J, Zuraw, B, Lumry, W & Christiansen, S 2018, 'Hereditary angioedema from the patient's perspective: A follow-up patient survey', Allergy and Asthma Proceedings, vol. 39, no. 3, pp. 212-223. https://doi.org/10.2500/aap.2018.39.4123
Banerji, Aleena ; Li, Yu ; Busse, Paula ; Riedl, Marc A. ; Holtzman, Nicole S. ; Li, Huamin ; Davis-Lorton, Mark ; Bernstein, Jonathan A. ; Frank, Michael ; Castaldo, Anthony J. ; Long, Janet ; Zuraw, Bruce ; Lumry, William ; Christiansen, Sandra. / Hereditary angioedema from the patient's perspective : A follow-up patient survey. In: Allergy and Asthma Proceedings. 2018 ; Vol. 39, No. 3. pp. 212-223.
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abstract = "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.",
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AU - Riedl, Marc A.

AU - Holtzman, Nicole S.

AU - Li, Huamin

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

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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.

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