Current Medical Management of Hereditary Angioedema (HAE): Follow-up to a Large Survey of US Physicians

Abstract

Clinician surveys on HAE management in 2010 and 2013 revealed important trends in HAE care. The objectives of this follow-up survey were to further evaluate current HAE management and the impact of new treatment options on evolving clinician practice patterns over time. During June and July 2019, 5387 physicians were contacted via postal mail (from HAEA and ACAAI mailing lists) to complete a 47-question survey, of whom 177 responded (3%). Across the three surveys, use of danazol as the most frequently prescribed long-term prophylactic (LTP) HAE treatment dropped from 56% in 2010 to 20% in 2013 to 6% in 2019 (P<.001). Conversely, clinicians reporting C1-INH as the most commonly prescribed LTP increased from 23% to 57% to 60% (P<.001), respectively, with the majority now prescribing the subcutaneous (SC) form (41% SC vs 19% intravenous). Regarding the strongest non-efficacy factor influencing treatment choice, cost/insurance coverage surpassed adverse effects for clinicians, increasing to 44% (from 24% in 2010 and 40% in 2013; P=.001), while concern over adverse effects dropped to 16% (from 56% in 2010 and 30% in 2013; P<.001). The percentage of patients self-treating attacks doubled since 2013 (27% to 54%; P<.001), and the home replaced the emergency department (ED) as the most commonly reported setting for attack treatment (54% vs 35%). Clinicians reported patient satisfaction remains high, with only 1.5% of clinicians indicating patients are not satisfied with treatment. These findings confirm current HAE treatment options allow for higher rates of home treatment, decreased ED visits, and increased patient satisfaction.