Table 2 Characteristics of the patients and caregivers involved in the pilot testing of the two disease-specific questionnaires, “Quality of Life in Epidermolysis Bullosa” and “Epidermolysis Bullosa Burden of Disease”
Variable | Levels | Patients | Caregivers | |||
|---|---|---|---|---|---|---|
N | % | N | % | |||
Sex | Male | 9 | 52.9 | 2 | 16.7 | |
Female | 8 | 47.1 | 10 | 83.3 | ||
Age (years) | 0-10 | 7 | 41.2 | <40 | 6 | 50.0 |
11-17 | 4 | 23.5 | ≥40 | 6 | 50.0 | |
≥18 | 6 | 35.3 | ||||
Median | Min-Max | Median | Min-Max | |||
14 | 1-56 | 39 | 34-51 | |||
Education | Primary | 0 | 0.0 | |||
High School | 2 | 20.0 | ||||
University | 8 | 80.0 | ||||
(Missing) | 2 | |||||
Work | Yes | 1 | 5.9 | 11 | 94.1 | |
No (Unemployed) | 1 | 5.9 | ||||
At home | 3 | 17.7 | ||||
Still at school | 10 | 58.8 | ||||
Retired | 2 | 11.7 | 1 | 5.9 | ||
Diagnosis | EBS | 4 | 23.5 | |||
JEB | 3 | 17.7 | ||||
DEB | 9 | 52.9 | ||||
KEB | 1 | 5.9 | ||||