BACKGROUND: Long-term prophylaxis (LTP) can help manage hereditary angioedema (HAE). With increasing LTP treatment options, understanding patients' preferences is important for shared decision-making.
OBJECTIVE: To understand the way individuals with HAE assess the importance of LTP treatment attributes, their LTP treatment preferences, and the impact of disease and treatment attributes on their willingness to switch LTP.
METHODS: We conducted an online survey in 2023 among US adults (aged ≥18 years) self-reporting an HAE diagnosis and receiving treatment (LTP, on-demand, or both) or experiencing at least 1 attack in the past 3 months. Best-worst scaling and a discrete choice experiment assessed LTP preferences. A behavior change model assessed willingness to switch LTP.
RESULTS: A total of 150 individuals completed the survey. Respondents rated effectiveness in preventing attacks and reducing the severity of attacks as the most important LTP attributes. Route of administration and convenience were more than twice as important as dosing frequency. Individuals preferred oral daily therapy to biweekly (54% vs 46%) or monthly injections (54% vs 46%). Most individuals (71%) were at least somewhat willing to switch LTP treatments in the next 6 months, particularly those whose HAE was not well controlled, were anxious about taking LTP, were burdened by treating their HAE, or preferred oral administration.
CONCLUSION: Effectiveness was the primary driver of LTP preference; other factors were also important, including convenience. When effectiveness was equivalent, oral administration was preferred to injectable administration. Individuals with HAE were moderately willing to switch their LTP. By better understanding patients' treatment preferences, health care professionals can individualize LTP recommendations.
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