Table 2 Cross-mapping of HRQoL concepts and themes identified from patient interviews with the AE-QoL questionnaire

HRQoL-related concepts

 HAE symptoms

No or nearly no attacks

X

 Change in impact of triggers

Stress/anxiety no longer a trigger

X

Sports no longer/less of a trigger

2

 Emotional

Less anxiety/worry caused by HAE

13, 14

Disease no longer limiting

12

Less depression/sadness caused by HAE

10

Less embarrassed/self-conscious

3, 16

 Work life/school

Less sick leave

1

Less missed school

1

Improved mental work capacity

1

Improved physical work capacity

1

 Social life/leisure

More able to travel

3

More keeping/less canceling social plans

3, 4

Spending more time with family/friends

3, 4

Ashamed of going out in public

4, 15

 Partner/family

Improved relationship with children

2, 4

Spouse/family needs to help less with administering medications

X

 Day-to-day activities

Improvement in day-to-day tasks

2

 Cognition

Improved general cognition

9

 Sleep/energy

Improved energy/less fatigue

8

Less trouble falling asleep

6

Less waking at night due to attacks

7

 Medical care

Less ER/hospital visits

X

Less routine HCP visits

X

No reliance on HCP to administer

X

 Sports/exercise

Improvement starting/resuming sports

2, 3

 Diet/appetite

Appetite is unaffected by abdominal attacks

5, 11

Treatment-specific concepts

 Experience with HAE treatments

Struggle to find a vein

X

Androgen side effects

X

 C1INH(SC) pros

Would recommend C1INH(SC)

X

Self-administration/independence

X

Prefer non-IV administration method

X

Able to administer in public/on-the-go

X

 Experience with C1INH(SC)

Ease of administration

X

Easy to remember to take

X

Confidence in use

X

Easy to learn to inject

X

 Long-term use

No concerns about long-term use

17