TABLE 1.
Characteristics of Patients Whose Electronic Health Records Were Available and Abstracted
| Characteristic | Total (n = 303) | Insufficient notesa (n = 30) | DMD (n = 216) | BMD (n = 34) | DBMD (n = 7) | Otherb (n = 16) |
|---|---|---|---|---|---|---|
| Age, years, mean (SD) | 14.8 (8.3) | 13.1 (9.3) | 14.4 (7.8) | 15.8 (9.3) | 20.0 (8.0) | 19.4 (10.0) |
| Race and ethnicity, n (%) | ||||||
| Non-Hispanic White | 187 (61.7) | 23 (76.7) | 127 (58.8) | 23 (67.7) | 5 (71.4) | 9 (56.3) |
| Hispanic | 36 (11.9) | 2 (6.7) | 27 (12.5) | 2 (5.9) | 1 (14.3) | 4 (25.0) |
| Non-Hispanic Asian | 13 (4.3) | 0 (0.0) | 11 (5.1) | 2 (5.9) | 0 (0.0) | 0 (0.0) |
| Non-Hispanic Black | 9 (3.0) | 2 (6.7) | 7 (3.2) | 0 (0.0) | 0 (0.0) | 0 (0.0) |
| Other/unknown | 58 (19.1) | 3 (10.0) | 44 (20.4) | 7 (20.6) | 1 (14.3) | 3 (18.8) |
| Geographic region, n (%) | ||||||
| Midwest | 118 (38.9) | 14 (46.7) | 77 (35.7) | 18 (52.9) | 5 (71.4) | 4 (25.0) |
| Northeast | 83 (27.4) | 7 (23.3) | 55 (25.5) | 11 (32.4) | 1 (14.3) | 9 (56.3) |
| West | 75 (24.8) | 2 (6.7) | 65 (30.1) | 5 (14.7) | 1 (14.3) | 2 (12.5) |
| South | 23 (7.6) | 5 (16.7) | 17 (7.9) | 0 (0.0) | 0 (0.0) | 1 (6.3) |
| Other | 4 (1.3) | 2 (6.7) | 2 (0.9) | 0 (0.0) | 0 (0.0) | 0 (0.0) |
| Insurance type, n (%) | ||||||
| Medicaid | 152 (50.2) | 11 (36.7) | 114 (52.8) | 16 (47.1) | 4 (57.1) | 7 (43.8) |
| Commercial | 130 (42.9) | 16 (53.3) | 89 (41.2) | 17 (50) | 2 (28.6) | 6 (37.5) |
| Medicare | 6 (2.0) | 0 (0.0) | 4 (1.9) | 0 (0).0 | 1 (14.3) | 1 (6.3) |
| Unknown | 15 (5.0) | 3 (10.0) | 9 (4.2) | 1 (2.9) | 0 (0.0) | 2 (12.5) |
| Charlson Comorbidity Index score category, n (%) | ||||||
| 0 | 180 (59.4) | 22 (73.3) | 122 (56.5) | 20 (58.8) | 6 (85.7) | 10 (62.5) |
| 1-2 | 84 (27.7) | 5 (16.7) | 64 (29.6) | 12 (35.3) | 0 (0.0) | 3 (18.8) |
| 3-4 | 32 (10.6) | 2 (6.7) | 25 (11.6) | 2 (5.9) | 1 (14.3) | 2 (12.5) |
| 5+ | 7 (2.3) | 1 (3.3) | 5 (2.3) | 0 (0.0) | 0 (0.0) | 1 (6.3) |
| Pediatric CCC index score category, n (%) | ||||||
| 0 | 0 (0.0) | 0 (0.0) | 0 (0.0) | 0 (0.0) | 0 (0.0) | 0 (0.0) |
| 1-2 | 202 (66.7) | 24 (80.0) | 139 (64.4) | 21 (61.8) | 6 (85.7) | 12 (75.0) |
| 3+ | 101 (33.3) | 6 (20.0) | 77 (35.7) | 13 (38.2) | 1 (14.3) | 4 (25.0) |
| Pediatric CCC, n (%) | ||||||
| Cardiovascular | 126 (41.6) | 7 (23.3) | 96 (44.4) | 16 (47.1) | 3 (42.9) | 4 (25.0) |
| Respiratory | 73 (24.1) | 3 (10.0) | 62 (28.7) | 4 (11.8) | 0 (0.0) | 4 (25.0) |
| Technology dependence | 61 (20.1) | 4 (13.3) | 51 (23.6) | 3 (8.8) | 0 (0.0) | 3 (18.8) |
| Other congenital or genetic defect | 51 (16.8) | 5 (16.7) | 40 (18.5) | 2 (5.9) | 0 (0.0) | 4 (25.0) |
| Gastrointestinal | 38 (12.5) | 3 (10.0) | 32 (14.8) | 1 (2.9) | 0 (0.0) | 2 (12.5) |
| Metabolic | 38 (12.5) | 2 (6.7) | 21 (9.7) | 12 (35.3) | 1 (14.3) | 2 (12.5) |
| Renal and urologic | 14 (4.6) | 1 (3.3) | 11 (5.1) | 1 (2.9) | 0 (0.0) | 1 (6.3) |
| Hematologic or immunologic | 8 (2.6) | 1 (3.3) | 3 (1.4) | 3 (8.8) | 0 (0.0) | 1 (6.3) |
| Malignancy | 3 (1.0) | 0 (0.0) | 2 (0.9) | 0 (0.0) | 0 (0.0) | 1 (6.3) |
| Transplant | 3 (1.0) | 1 (3.3) | 0 (0.0) | 2 (5.9) | 0 (0.0) | 0 (0.0) |
| Mental health and cognitive conditions, n (%) | ||||||
| Depression/anxiety, including OCD | 57 (18.8) | 6 (20.0) | 42 (19.4) | 4 (11.8) | 2 (28.6) | 3 (18.8) |
| Learning disabilities, including dyslexia/dyscalculia | 54 (17.8) | 8 (26.7) | 34 (15.7) | 7 (20.6) | 1 (14.3) | 4 (25.0) |
| ADHD | 33 (10.9) | 7 (23.3) | 23 (10.7) | 3 (8.8) | 0 (0.0) | 0 (0.0) |
| Autism | 27 (8.9) | 4 (13.3) | 17 (7.9) | 4 (11.8) | 2 (28.6) | 0 (0.0) |
a Electronic health record contained insufficient notes to determine DMD diagnosis status.
b Includes undetermined diagnoses and conditions, such as LAMA2-associated MD, nonspecific limb-girdle MD, limb-girdle/Emery-Dreifuss MD, merosin-negative MD, POMT1 MD, Ulrich MD, and cerebral palsy.
BMD = Becker muscular dystrophy; CCC = complex chronic conditions; DBMD = Duchenne/Becker muscular dystrophy; DMD = Duchenne muscular dystrophy; MD = muscular dystrophy.