Table 1 Characteristics of caregivers and individuals with XLMTM
Characteristic | Caregivers (N = 22)* |
|---|---|
Median age (IQR), years | 44.5 (11.0) |
Sex, female, n (%) | 17 (76) |
Highest level of education, n (%) | Â |
 Completed high school/GED | 2 (9) |
 Bachelor's degree | 10 (46) |
 Master's degree | 6 (27) |
 Other degrees | 4 (18) |
Median caregiving years (IQR) | 17 (16.75) |
Median number of additional unpaid caregiver (IQR) | 2 (1.75) |
Median proportion of unpaid caregiving hours (IQR) | 46 (29.11) |
Individuals with XLMTM | |
|---|---|
Characteristic | Individuals with XLMTM (N = 22) |
Number alive at the time of the survey, n (%) | 19 (86) |
Median age (IQR), years | 16 (12.5) |
Invasive ventilation, n | 14 |
BIPAP, n | 6 |
Supportive O2, n | 6 |
SIMV, n | 6 |
Pressure support, n | 7 |
IPPV, n | 1 |