Table 1 Caregiver and Patient Characteristics
From: Development of the Impact of Juvenile Metachromatic Leukodystrophy on Physical Activities scale
Characteristic | Concept Elicitation Interviews (N = 5) | Cognitive Debriefing Interviews (N = 6) |
|---|---|---|
Caregiver | ||
Sex, female, n (%) | 4 (80.0) | 3 (50.0) |
Age, years, mean (range) | 48.6 (37, 58) | 55.7 (46, 66) |
Race/ethnicity, n (%) | ||
White | 5 (100) | 5 (83.3) |
Hispanic | – | 1 (16.7) |
Education level, n (%) | ||
High school diploma/GED | – | 1 (16.7) |
Some college | 2 (40.0) | 3 (50.0) |
College degree | 3 (60.0) | – |
Professional/advanced degree | – | 2 (33.3) |
Employment status, n (%) | ||
Full time | 1 (20.0) | 3 (50.0) |
Part time | 2 (40.0) | 1 (16.7) |
Unemployed | 2 (40.0) | 2 (33.3) |
Patient | ||
Sex, female, n (%) | 3 (60.0) | 4 (66.7) |
Age, years, mean (range) | 19.0 (9, 33) | 23.2 (13, 33) |
Race/ethnicity, n (%) | ||
White | 5 (100) | 5 (83.3) |
Hispanic | – | 1 (16.7) |
Age at onset, years, mean | 9.4 | 9.5 |
median (range) | 8.0 (5, 15) | (5, 14) 8.6 |
Age at diagnosis, years, mean | 13.0 | 10.7 |
median (range) | 14.0 (6, 21) | (3, 14) 11.5 |
Time between onset and diagnosis, years, mean | 3.7 | 1.1 |
median (range) | 5.0 (0.5, 6.0) | (−5.5, 7.0) 1.1a |
Time between diagnosis and present, years, mean | 6.0 | 12.5 |
median (range) | 3.0 (1, 19) | (2.0, 21.0) 12.5 |
Time between onset and present, years, mean | 9.6 | 13.6 |
median (range) | 6.0 (2, 25) | (5.0, 28.0) 13.3 |