Box 1.

Common Examples of Concerns Related to HAE Treatment Decision-Making

Medical History Attack history (frequency, location, severity, impact on QoL and well-being) Patient experience with on-demand therapy (response, achievement of control, ability to administer, adverse effects) Patient experience with and response to long-term prophylaxis (efficacy, administration, adverse effects) History of adverse effects of treatment Comorbidities (eg, high thromboembolic risk)

Patient Goals Desire to live a “normal” life/minimize impact of attacks on QoL Desire to engage in specific activities (eg, sports) with less fear of an HAE attack HAE-related limitations for work, school, and/or social functions Travel Family planning Patient’s support system

Patient Preference Anxiety or fear of potential attacks Preferences for route of administration; ability and willingness to self-administer (eg, burden of treatment, needle phobia) Family or personal experience with and perceptions of HAE and specific HAE medications Minimize impact of disease on day-to-day living Minimize treatment burden Concerns about adverse effects Availability of caregiver support Cost and access/medical insurance

Access Cost of treatment/insurance coverage Distance from clinic Distance/time to the nearest emergency department

Abbreviations: HAE, hereditary angioedema; QoL, quality of life.