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Table 1 Demographic and Clinical Characteristics of the Concept Elicitation Samples (N = 43)

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

Demographic or clinical characteristic Initial Concept Elicitation Sample Second Concept Elicitation Sample
(N = 32) (N = 11)
Demographic Characteristics
Age
Mean 39.5 38
Median 39.5 36
Min, Max 20-75 19-54
Gender (n) (%)
Male 9 (28.1) 5 (45.5)
Female 23 (71.9) 6 (54.5)
How would you rate your health in general (n) (%)
Excellent 1 (3.1) 2 (18.2)
Very good 11 (34.3) 4 (36.4)
Good 12 (37.5) 3 (27.3)
Fair 5 (15.6) 1 (9.1)
Poor 3 (9.4) 1 (9.1)
Clinical Characteristics
Age diagnosed with hereditary angioedema
Mean 20.3 23.6
Median 20.5 23
Min, Max 1.5-47 7-44
Type of HAE (n) (%)
Type I 28 (87.5) 11 (100)
Type II 4 (12.5) 0 (0)
Type of most recent attack n (%)
Cutaneous 14 (43.8) 5 (45.5)
Abdominal 12 (37.5) 5 (45.5)
Laryngeal 2 (6.3) 0 (0)
Cutaneous and abdominal 3 (9.4) 1 (9)
Cutaneous, abdominal and laryngeal 1 (3.3) 0 (0)
How were you diagnosed with HAE (n) (%)
General Practitioner 4 (3.9) 0 (0)a
HAE specialist 14 (43.8) 5 (45.5)
Diagnosed because other family members had the condition 13 (40.6) 4 (36.6)
Other: 1 (3.1) 0 (0)
Allergist 3 (9.4) 0 (0)
Gastroenterologist 1 (3.1) 0 (0)
National Institutes of Health (NIH) 1 (3.1) 0 (0)
Immunologist 1 (3.1) 0 (0)
Pediatrician 1 (3.1) 0 (0)
Research clinic 1 (3.1) 0 (0)
Research physician 0 (0) 1 (9.1)
Physician – internist 0 (0) 1 (9.1)
Rheumatologist 0 (0) 1 (9.1)
  1. an value adds up to more than 11 as one patient reported more than one method of diagnosis