Background: Advances in paediatric intensive care have reduced mortality but, unfortunately, one of the consequences is an increase in the number of patients with chronic diseases. It is generally agreed that home care of children requiring ventilatory support improves their outcomes and results in cost saving for the National Health Service.
Methods: Since 1985, the Children's Hospital Bambino Gesù of Rome has developed a program of paediatric home care. The program is performed by a committed Home Health Care Team (HHCT) which selects the eligible patients for home care and trains the families to treat their child. During the period January 1985 to January 2001, 53 children with chronic respiratory failure were included in the home care program. Of these, seven patients were successively excluded and six died in our intensive care unit (ICU), while one still lives in our ICU since 1997. The results obtained in the remaining 46 children are reported.
Results: The pathologies consisted of disorders of respiratory control related to brain damage (26%), upper airways obstructive disease (26%), spinal muscular atrophy (22%), myopathies and muscular dystrophies (6.5%), bronchopulmonary dysplasia (6.5%), tracheomalacia (6.5%), central hypoventilation syndrome (4.3%) and progressive congenital scoliosis (2.2%). Of these 46 patients, 34 children are mechanically ventilated and the median of their ICU stay was 109.5 days (range 54-214 days), while the remaining 12 children were breathing spontaneously and the median of their ICU stay was 90.5 days (range 61-134 days). We temporarily readmitted six patients to our ICU to perform scheduled otolaryngological surgery, eight patients for acute respiratory infections and two patients for deterioration of their neurological status due to high pressure hydrocephalus for placement of a ventriculoperitoneal shunt; these 16 patients were discharged back home again. Two other patients were readmitted for deterioration of their chronic disease and died in our ICU, while seven patients died at home.
Conclusions: Thirty-seven children are still alive at home and four of them improved their respiratory condition so that it was possible to remove the tracheostomy tube. Our oldest patient has now achieved 15 years of mechanical ventilation at home.