Before and after, the impact of available on-demand treatment for HAE

Sandra C. Christiansen, Anette Bygum, Aleena Banerji, Paula Busse, Huamin Li, William Lumry, Mark Davis-Lorton, Jonathan A. Bernstein, Michael M. Frank, Anthony Castaldo, Janet F. Long, Marc Riedl, Bruce L. Zuraw

Research output: Contribution to journalArticle

Abstract

Availability of effective treatment for acute attacks is expected to transform the care of hereditary angioedema (HAE) patients. We felt that it would be of interest to test these assumptions by examining the perceptions of HAE patients regarding the impact that these therapies have had on their lives. Patients at a United States HAE Association summit meeting were asked to rate the burden of HAE currently and compare by recall with 2009 when these therapies were not available. Questions covered five domains: psychological/emotional status, ability to carry out daily activities, fear of suffocation, worry about their children inheriting HAE, and medication side effects. Data were analyzed using Wilcoxon signed-rank tests or analysis of variance. Responses were obtained from 134 self-identified HAE subjects: 85 type I, 21 type II, and 28 with normal C1 inhibitor (C1INH). Burden of disease showed significant improvement in all domains except worry about children inheriting HAE. With the introduction of newer therapies, subjects with the most severe burden of illness improved more than those with milder burdens. However, significant burden of illness remained. The availability of the current treatments has substantially improved the quality of life for HAE patients in the United States, similar to a survey of Danish HAE patients regarding the introduction of home treatment. Nevertheless, our study shows that a substantial burden of illness remains for HAE patients.

Original languageEnglish (US)
Pages (from-to)145-150
Number of pages6
JournalAllergy and Asthma Proceedings
Volume36
Issue number2
DOIs
StatePublished - Mar 1 2015
Externally publishedYes

Fingerprint

Hereditary Angioedemas
Cost of Illness
Therapeutics
Aptitude
Asphyxia
Nonparametric Statistics
Fear
Analysis of Variance
Quality of Life

ASJC Scopus subject areas

  • Immunology and Allergy
  • Pulmonary and Respiratory Medicine
  • Medicine(all)

Cite this

Christiansen, S. C., Bygum, A., Banerji, A., Busse, P., Li, H., Lumry, W., ... Zuraw, B. L. (2015). Before and after, the impact of available on-demand treatment for HAE. Allergy and Asthma Proceedings, 36(2), 145-150. https://doi.org/10.2500/aap.2015.36.3831

Before and after, the impact of available on-demand treatment for HAE. / Christiansen, Sandra C.; Bygum, Anette; Banerji, Aleena; Busse, Paula; Li, Huamin; Lumry, William; Davis-Lorton, Mark; Bernstein, Jonathan A.; Frank, Michael M.; Castaldo, Anthony; Long, Janet F.; Riedl, Marc; Zuraw, Bruce L.

In: Allergy and Asthma Proceedings, Vol. 36, No. 2, 01.03.2015, p. 145-150.

Research output: Contribution to journalArticle

Christiansen, SC, Bygum, A, Banerji, A, Busse, P, Li, H, Lumry, W, Davis-Lorton, M, Bernstein, JA, Frank, MM, Castaldo, A, Long, JF, Riedl, M & Zuraw, BL 2015, 'Before and after, the impact of available on-demand treatment for HAE', Allergy and Asthma Proceedings, vol. 36, no. 2, pp. 145-150. https://doi.org/10.2500/aap.2015.36.3831
Christiansen, Sandra C. ; Bygum, Anette ; Banerji, Aleena ; Busse, Paula ; Li, Huamin ; Lumry, William ; Davis-Lorton, Mark ; Bernstein, Jonathan A. ; Frank, Michael M. ; Castaldo, Anthony ; Long, Janet F. ; Riedl, Marc ; Zuraw, Bruce L. / Before and after, the impact of available on-demand treatment for HAE. In: Allergy and Asthma Proceedings. 2015 ; Vol. 36, No. 2. pp. 145-150.
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