Chronic mechanical ventilation-dependent children in Canada

To determine the number, diagnoses, adjunctive therapies and setting of care of Canadian children chronically dependent on mechanically assisted ventilation. Secondary objectives included determining for those children in the home or community the number of hours of additional health care provider support allocated through provincial health care plans and the source of funds for the costs of mechanical ventilation in the home. Descriptive questionnaire sent to all Canadian directors of paediatric critical care units (PCCU) in university teaching hospitals in 1993. Children between 44 weeks postconceptual age and 18 years of age known to be dependent on assisted ventilation for three months and/or predicted to require mechanical ventilation at the time of the survey for at least a further two months. Primary diagnoses, concurrent therapies in addition to assisted ventilation, setting of care (eg, PCCU, intermediate care unit, community hospital, home) and the specialty of the physician supervising ventilator care in the home. For children receiving ventilation in the home, measures were additional hours families received from other health care professionals to assist in the care of these children, the estimated length of time these children might require assisted ventilation, and the funding source or agency used to pay for the costs of ventilator care in the home. There were 82 children identified to be dependent on assisted ventilation. The largest group was between one and three years of age. The diagnoses included neuromuscular disease in 27%, central hypoventilation syndrome in 21%, spina bifida/spinai cord injury in 18%, non-cardiac congenital disease in 10%, acquired brain injury in 6%, bronchopulmonary dysplasia in 5% and miscellaneous in 13%. The adjunctive therapies in these patients included tracheostomy in 77, enteral tube feeding in 42 and supplemental oxygen in 36. Forty-five of 82 children received ventilation at home, 15 in PCCUs, 12 in intermediate care units and 10 in community hospitals. PCCU physicians supervised home ventilation in 20 of 45 children, and paediatric respirologists supervised home ventilation in 17 of 45 children. There was variability in the skill sets of health care providers, and assisting families in the home and cost recovery mechanisms varied widely. The estimated length of future ventilator dependency was more than five years in 51 of 82 children. Neuromuscular disease is the most common etiology resulting in ventilator dependency in children. The skill sets of healthcare providers and the number of hours of additional help these families received varied widely. A need is postulated for a national registry of all Canadian children dependent on assisted ventilation to facilitate long term outcome study and to help determine the additional resource needs for families of such challenged children.