Table 1 Clinical characteristics of patients
N | % | |
|---|---|---|
Total | 3479 | 100 |
Gender | ||
Male | 1971 | 56.7 |
Female | 1508 | 43.3 |
Age | ||
< 1 year | 370 | 10.6 |
1–2 years | 773 | 22.2 |
3–5 years | 870 | 25.0 |
6–11 years | 884 | 25.4 |
12–17 years | 514 | 14.8 |
> 18 years | 68 | 2.0 |
Devices | ||
Yes | 783 | 22.5 |
No | 2696 | 77.5 |
Type of devices | ||
Central venous catheters | 147 | 14.1 |
Gastrostomy tubes (PEG or PEJ) | 562 | 53.7 |
Home non invasive ventilation | 75 | 7.2 |
Home oxigen therapy | 49 | 4.7 |
Cough assist equipment | 39 | 3.7 |
Tracheostomy | 174 | 16.6 |
Etiological diagnosis | ||
Defined diagnosis | 2506 | 72.0 |
Syndromic disorders | 1358 | 54.2 |
Metabolic diseases | 304 | 12.1 |
Neuromuscular diseases | 139 | 5.5 |
Congenital skeletal condition | 49 | 2.0 |
True isolated microcephaly | 25 | 1.0 |
Isolated CNS malformations | 194 | 7.7 |
Epilepsy under AED | 437 | 17.4 |
Presumptive diagnosis | 973 | 28.0 |
Syndromic disorders | 533 | 54.8 |
Metabolic diseases | 91 | 9.4 |
Neuromuscular diseases | 54 | 5.5 |
Congenital skeletal condition | 7 | 0.7 |
Medical devices users | 288 | 29.6 |