Current medical management of hereditary angioedema: follow-up survey of US physicians

Background: A physician survey conducted in the United States between October 2009 and February 2010 revealed wide variability in hereditary angioedema (HAE) management.

Objective: A follow-up survey was conducted to assess the impact of newly available treatment options and investigate changes in HAE care patterns.

Methods: Between March and June 2013, 6570 physicians were contacted, of whom, 245 HAE-treating physicians responded. Participants completed a 46-question online survey that was closely patterned after the initial survey. Although most data were analyzed descriptively, selected questions underwent statistical analysis to evaluate differences in treatment patterns between the 2 surveys.

Results: Compared with the prior survey, this follow-up survey found that the proportion of physicians who reported danazol as the preferred long-term prophylaxis agent declined from 56% to 23% (P < .00005); conversely, C1-esterase inhibitor increased in this category (20% to 57%; P < .00005). The percentage of attacks self-treated at home increased from 8% to 27% (P < .00005). Decreases were observed in emergency department visits (61% to 54%; P = not significant) and hospitalizations (13% to 3%; P = .0001) for HAE attacks. The percentage of patients perceived by physicians to be very satisfied with HAE treatment increased from 13% to 40% (P < .00005). In 2013, convenience was reported more frequently as an important patient factor that drove long-term prophylaxis choice (27% vs 10%; P < .00005), whereas adverse effects were cited less frequently (16% vs 42%; P < .00005); in both surveys, cost and/or insurance coverage was the greatest driver in this category (43% and 46%).

Conclusion: Analysis of these findings suggests that the change in HAE treatment has increased self-treatment at home, decreased emergency department visits and/or hospitalizations, and provided greater patient satisfaction.