Table 1 Survey items on direct and indirect resource utilization

Direct medical resource utilization over the past 6 months

“Treatment visit for last attack”

Please report the type of visit you had, to the best of your knowledge, for your most recent attack.

Endorsement of 0 or 1 item = low

Endorsement of at least one type of treatment visit = 1

“Used medication for last attack”

Which prescription medication(s) were used for the treatment of your most recent attack? Please indicate the name/type of all medication prescribed by your doctor(s) you used for the most recent HAE attack.

Endorsement of 2 = medium

Endorsement of at least one type of medication = 1

Endorsement of 3 or 4 = high

“Had a routine care visit for HAE in the past 6 months”

In the past 6 months, how many times have you been to the hospital or clinic for routine care related to HAE? Please exclude visits related to HAE attacks.

Endorsement of at least one visit = 1

“Used anti-anxiety or anti-depressant medication”

Which of the following medications have you taken during the past 6 months (check all that apply)?

Endorsement of “anti-anxiety medication” and/or “anti-depressants” = 1

Estimated absenteeism over one year

“Attacks per year”

HAE attacks may be mild, moderate, or severe. In the past year, approximately how often did you experience an HAE attack of any severity (please account for all attacks regardless of severity)?

1. Reported attack frequency extrapolated to estimate annual frequency.

• Less than once a month (Approximately how many per year?___)

2. Annual frequency multiplied by amount of absenteeism for the last attack.

• At least once a month but less than once a week (Approximately how many per month?___)

3. Added to twice the amount of absenteeism between attacks over the past 6 months.

• At least once a week (Approximately how many per week?___)

“Absenteeism during the last attack”

During your most recent attack, how many hours or days did you miss from work and/or school because of problems associated with the HAE attack? Include hours you missed on sick days, times you arrived late, left early, etc., because of the HAE attack.

“Absenteeism between attacks over the past 6 months”

In the past six months, how many days did you miss from work and/or school because of problems associated with HAE in between attacks? Include hours you missed on sick days, times you arrived late, left early, etc., in between attacks.

Attack severity

“Attack pain severity”

What was the worst pain you had during your most recent HAE attack? 0 = No pain; 1 = Mild; 2 = Moderate; 3 = Severe

Average of pain and swelling scores

“Attack swelling severity”

How would you describe the severity of swelling of your most recent attack?

• 1 = Mild (noticeable symptoms but they did not affect your daily activities)

• 2 = Moderate (you wanted intervention for symptoms during the attack or your daily activities were affected)

• 3 = Severe (treatment or intervention was required or you were unable to perform daily activities)