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Table 6 Demographic and Clinical Characteristics of the Second Cognitive Debriefing Sample (N = 24)

From: Development and content validity testing of a patient-reported outcomes questionnaire for the assessment of hereditary angioedema in observational studies

  Germany (n = 12) US (n = 12) Total (n = 24)
Demographic Characteristics
Age of patient    
Mean 40.6 42.5 41.5
Min - Max 23-61 21-60 21-61
Gender n (%)    
Male 3 (25) 6 (50) 9 (37.5)
Female 9 (75) 6 (50) 15 (62.5)
Highest education level n (%)
Some high school 1 (8.3) 0 1 (2.4)
High school diploma or GED 2 (16.7) 3 (25) 5 (20.8)
Some years of college 3 (25) 3 (25) 6 (25)
Vocational qualification or Apprenticeship 5 (41.7) 1 (8.3) 6 (25)
University or College degree 1 (8.3) 4 (33.3) 5 (20.8)
Post-graduate degree or qualification 0 1 (8.3) 1 (4.2)
Clinical Characteristics
Type of Hereditary Angioedema n (%)
Type I 11 (91.7) 12 (100) 23 (95.8)
Type II 1 (8.3) 0 1 (4.2)
Type of Hereditary Angioedema attack(s) experienced in the past six monthsa n (%)    
Cutaneous edema (skin swelling) 10 (83.3) 11 (91.6) 21 (87.5)
Abdominal edema (internal swelling) 8 (66.7) 7 (29.2) 15 (62.5)
Laryngeal edema (throat swelling) 2 (16.6) 2 (16.6) 4 (16.7)
Type of Hereditary Angioedema attack(s) experienced most recentlya n (%)    
Cutaneous edema (skin swelling) 9 (75) 8 (66.7) 17 (70.8)
Abdominal edema (internal swelling) 5 (41.6) 5 (41.6) 10 (41.6)
Laryngeal edema (throat swelling) 0 (0) 0 (0) 0 (0)
Days since last attack    
Mean 784 64.25 424
Min – Max 1-8604 3-405 1-8604
Hereditary Angioedema diagnosis by n (%)    
General Practitioner (GP) 1 (8.3) 2 (16.7) 13 (12.5)
Hereditary Angioedema Specialist 7 (58.3) 5 (41.7) 12 (50)
Diagnosed because other family members had the condition 4 (33.3) 4 (33.3) 8 (33.3)
Other 0 (0) 1 (8.3) 1 (4.2)
  1. aPatients could select more than one type of attack