Table 1 Baseline Demographic and Clinical Characteristics, n = 57
Child Characteristics | |
|---|---|
 Child age, mean (SD) | 12.4 (6.2) |
 Child female, n (%) | 28 (49.1%) |
 Race/ethnicity, n (%) | |
  White, non-Hispanic | 42 (73.7%) |
  Asian | 6 (10.5%) |
  Black, non-Hispanic | 3 (5.3%) |
  Hispanic/Latino | 3 (5.3%) |
  Unknown | 3 (5.3%) |
 Insurance, n (%) | |
  Private only | 11 (19.3%) |
  Public only | 13 (22.8%) |
  Private and public | 33 (57.9%) |
Disease Characteristics | |
 Diagnosis, n (%) | |
  Acquired injury | 6 (10.5%) |
  Anomalies (All) | 4 (7.0%) |
  Chronic lung disease | 4 (7.0%) |
  Dystrophies | 12 (21.1%) |
  SMA (Types I, II, III) | 20 (35.1%) |
  Other | 11 (19.3%) |
 Respiratory support, n (%) | |
  Artificial | 3 (5.3%) |
  Artificial + ventilator | 23 (40.4%) |
  Non-invasive | 18 (31.6%) |
  None | 13 (22.8%) |
Physician-rated clinical severity, median (25th–75th percentile) | 6.0 (4.0–7.0) |
Family Characteristics | |
 Parent female, n (%) | 47 (82.5%) |
 Parent age, mean (SD) | 43.7 (7.8) |
 Parent education, n (%)a |  |
   < High school | 2 (3.7%) |
  High school graduate | 6 (11.1%) |
  Some college | 12 (22.2%) |
   ≥ College graduate | 34 (63.0%) |