Table 5 Category definitions and number of items per category in HAE − QoL questionnaire

Health conditions

To what extent the availability of adequate assistance from health services and the information (related to prevention and treatment) offered by health personnel affects daily life.

11

4

Physical functioning

To what extent HAE-C1-INH limits physical activities like self-care, grooming, walking, etc.

2

1

Social role

To what extent HAE-C1-INH interferes with normal social life and leisure activities (including sports, traveling, hobbies).

5

3

Emotional role

To what extent HAE-C1-INH affects emotional state/partnership/family.

3

3

Symptoms

Objective questions about clinical characteristics of the patient

8

0*

Physical role

To what extent HAE-C1-INH interferes with work, studies, or other daily activities, including a worsened performance in these activities, a limitation in the type of activities that can be performed, or difficulties in undertaking of these activities.

7

7

Aesthetics

To what extent the disease affects physical appearance and aesthetic habits.

2

1

General health

To what extent personal health assessment including current health, health perspectives for the future, resistance to disease and the influence of HAE-C1-INH on other aspects of health.

3

3

Mental health

To what extent general mental health, including depression, anxiety, and behavioral and emotional control are affected by HAE-C1-INH.

12

11

Treatment

To what extent HAE-C1-INH treatment affects daily life, regarding disease control, side-effects, availability of treatment.

11

11