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Patient Preferences for Long-Term Prophylactic Treatment in Hereditary Angioedema: A Discrete-Choice Experiment
Kathleen F Villa1, Carol Mansfield2, Aaron Yarlas3
1Ionis Pharmaceuticals, Inc., 2855 Gazelle Court, Carlsbad, CA, 92010, USA. kvilla@ionis.com.
The Patient
|January 21, 2026
Summary
Patients with hereditary angioedema prioritize reduced attack frequency and oral administration for long-term prophylactic treatments. Understanding these preferences is key for effective treatment decisions.
Area of Science:
- Medical research
- Patient-reported outcomes
- Pharmacology
Background:
- Limited research exists on patient preferences for hereditary angioedema (HAE) long-term prophylactic treatments.
- Existing treatments for HAE lack comprehensive patient preference data.
Purpose of the Study:
- To evaluate patient preferences for key attributes of long-term prophylactic HAE treatments.
- To understand patient trade-offs and willingness to initiate or switch treatments.
- To identify the most valued treatment characteristics by HAE patients.
Main Methods:
- An online discrete-choice experiment survey was conducted with US adults diagnosed with HAE.
- Respondents evaluated hypothetical treatment alternatives based on various attributes.
- Data were collected on treatment preferences, including mode of administration and side effect profiles.
Main Results:
- Reduced attack frequency was the most critical attribute (31.7% importance).
- Oral tablet administration (18.1%) and reduced gastrointestinal side effects (18.5%) were highly valued.
- A majority of respondents (78.8%) were open to starting new treatments with their preferred administration method.
Conclusions:
- Reducing attack frequency is paramount for HAE patients.
- Patient preferences vary, emphasizing the need for personalized treatment discussions.
- Shared decision-making between patients and physicians is crucial for selecting optimal HAE prophylactic therapies.
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