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Table 2 Demographic and Clinical Characteristics of the Initial Cognitive Debriefing Sample (N = 43)

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

  UK (n = 10) Brazil (n = 10) Germany (n = 11) France (n = 12) Total (n = 43)
Demographic Characteristics
Age of patient      
Mean 46 38 38 36 39
Min - Max 20-66 24-66 18-65 20-60 18 - 66
Gender n (%)
Male 2 (20) 2 (20) 5 (45) 6 (50) 15 (35)
Female 8 (80) 8 (80) 6 (55) 6 (50) 28 (65)
Highest education levela n (%)      
General Certificate of Secondary Education (GCSE) or less 6 (60) 0 1 (9) 0 7 (16)
Advanced (A) Levels 2 (20) 6 (60) 1 (9) 1 (8) 10 (23)
Vocational qualification or Apprenticeship 0 0 5 (45) 1 (8) 6 (14)
University or College degree 2 (20) 2 (20) 4 (36) 4 (33) 12 (28)
Post-graduate degree or qualification 0 2 (20) 0 6 (50) 8 (19)
Clinical Characteristics
Type of Hereditary Angioedema n (%)      
Type I N/Ab 9 (90) 9 (82) 9 (75) 27 (82)
Type II N/A 1 (10) 2 (18) 1 (8) 4 (12)
Missing data N/A 0 0 2 (17) 2 (6)
Type of Hereditary Angioedema attack(s) experienced in the past six months n (%)      
Cutaneous edema (skin swelling) 9 (90) 8 (80) 10 (91) 10 (83) 37 (86)
Abdominal edema (internal swelling) 7 (70) 6 (60) 9 (82) 9 (75) 31 (72)
Laryngeal edema (throat swelling) 5 (50) 2 (20) 3 (27) 2 (17) 12 (28)
Type of Hereditary Angioedema attack(s) experienced most recently n (%)      
Cutaneous edema (skin swelling) 5 (50) 6 (60) 7 (64) 8 (67) 26 (60)
Abdominal edema (internal swelling) 7 (70) 3 (30) 6 (55) 7 (58) 23 (53)
Laryngeal edema (throat swelling) 2 (20) 1 (10) 0 0 3 (7)
Days since last attack      
Mean 44 33 17 75 43
Min - Max 0 - 172 4 - 133 0 - 84 9 - 204 0 - 204
Hereditary Angioedema diagnosis by n (%)      
General Practitioner (GP) 3 (30) 0 1 (9) 0 4 (9)
Hereditary Angioedema Specialist 3 (30) 5 (50) 5 (45) 3 (25) 16 (37)
Diagnosed because other family members had the condition 2 (20)c 1 (10) 4 (36) 5 (42) 12 (28)
Diagnosis due to other tests/problems 2 (20) 0 1 (9) 0 3 (7)
Dermatologist 1 (10) 0 0 1 (8) 2 (5)
Pediatrician 0 0 0 1 (8) 1 (2)
Allergist 0 2 (20) 0 1 (8) 3 (7)
Emergency Physician 0 1 (10) 0 1 (8) 2 (5)
Neurologist 0 1 (10) 0 0 1 (2)
  1. aEducational levels are provided as described for the English interviews. The levels were translated and made culturally equivalent for each country
  2. bData for Type of HAE not available for UK patients as this was a clinician reported characteristic, no clinician reported data was collected in the UK
  3. cOne patient chose diagnosed by GP and diagnosed because other family member had the condition