TABLE 1.
Demographic and Clinical Characteristics of 1252 Children with LT-CCCs who Died in Children’s Hospitals in 2012
| Characteristic | Finding |
|---|---|
| Age at death, y, median (IQR) | 8 (3–14) |
| Gender,a n (%) | |
| Female | 558 (44.6) |
| Male | 693 (55.4) |
| Race/Ethnicity, n (%) | |
| White, non-Hispanic | 558 (44.6) |
| Hispanic | 276 (22.0) |
| Black, non-Hispanic | 176 (14.1) |
| Asian or Pacific Islander, non-Hispanic | 56 (4.5) |
| Other/Missing | 186 (14.9) |
| Type of primary health insurance, n (%) | |
| Public | 874 (69.8) |
| Commercial | 303 (24.2) |
| Self-pay | 75 (6.0) |
| LT-CCCs: types and diagnoses, n (%) | |
| Neuromuscular | 581 (46.4) |
| Epilepsy | 326 (26.0) |
| Central nervous system degradation/ disease | 285 (22.8) |
| Brain/ spinal cord malformations | 127 (10.1) |
| Infantile cerebral palsy | 160 (12.8) |
| Mental retardation | 79 (6.3) |
| Muscular dystrophies/ myopathies | 17 (1.4) |
| Cardiovascular | 569 (45.4) |
| Conduction disorders/dysrhythmias | 435 (34.7) |
| Heart/ great vessel malformations | 218 (17.4) |
| Cardiomyopathies | 74 (5.9) |
| Malignancy | 455 (36.3) |
| Solid malignancy | 215 (17.2) |
| Hematologic malignancy | 204 (16.3) |
| Secondary malignancy | 146 (11.7) |
| Metabolic | 337 (26.9) |
| Other metabolic disordersb | 295 (23.6) |
| Lipid metabolism | 36 (2.9) |
| Amino acid metabolism | 30 (2.4) |
| Carbohydrate metabolism | 10 (0.8) |
| Storage disorders | 7 (0.6) |
| Congenital/Genetic | 282 (22.5) |
| Bone/ joint anomalies | 132 (10.5) |
| Chromosomal anomalies | 128 (10.2) |
| Other congenital anomaliesc | 52 (4.2) |
| Diaphragm/ abdominal wall | 17 (1.4) |
| Hematologic/Immunologic | 206 (16.5) |
| Hereditary immunodeficiency | 178 (14.2) |
| Sickle cell disease | 18 (1.4) |
| Hereditary anemias | 15 (1.2) |
| Acquired immunodeficiency | 5 (0.4) |
| Respiratory | 124 (9.9) |
| Respiratory malformations | 65 (5.2) |
| Chronic respiratory disease | 51 (4.1) |
| Cystic fibrosis | 21 (1.7) |
| Renal | 99 (7.9) |
| Chronic renal failure | 81 (6.5) |
| Congenital anomalies | 27 (2.2) |
| Gastrointestinal | 93 (7.4) |
| Chronic liver disease/ cirrhosis | 77 (6.2) |
| Inflammatory bowel disease | 9 (0.7) |
| Congenital anomalies | 8 (0.6) |
| Number of LT-CCCs, n (%) | |
| 1 | 425 (34.0) |
| 2 | 396 (31.6) |
| ≥3 | 431 (34.4) |
a
Gender is missing for 1 child in the cohort.
b
Other metabolic disorders include disorders of iron, copper, phosphorus, magnesium, purine, and pyrimidine metabolism.
c
Other congenital anomalies include multiple congenital anomalies, other specified anomalies, congenital anomaly unspecified.