Survey of children supported by long-term mechanical ventilation in Switzerland

Objective: The aim of the present study was to identify the number of children, from birth to 16 years of age, on long-term mechanical ventilation in Switzerland, and to establish their current location, underlying diagnoses and ventilatory needs. Methods: Postal questionnaires were sent to all chest physicians (pulmonologists), intensive care specialists, neurologists, national health care organisations, rehabilitation services and ventilator suppliers known or thought to be involved in paediatric long-term ventilation in Switzerland. Results: Detailed information was obtained on 32 children from 7 centers. Underlying disorders included congenital central hypoventilation syndrome (CCHS, 41%), neuromuscular disorders (41%), spinal cord injury (6%), craniofacial anomalies (6%) and others (6%). 10 children received positive pressure ventilation by tracheostomy and 19 children by nasal mask. Two children were ventilated by phrenic nerve pacing and one child with the help of a pneumatic belt. Children with CCHS were almost equally divided into nasal mask and tracheostomy users. Ventilation for 16-24 hours a day was necessary in 5 children, exclusively during sleep in 24 children and only episodically in 3 children. All but 2 children were cared for at home. The majority of families received home care support. The most common reasons for readmission into hospital a ere regular follow-up examinations and respiratory tract infections. The children were mainly admitted to paediatric intensive care units. Conclusions: There are few ventilator-supported children in Switzerland and most of them are cared for at home. Nevertheless, there is a need to establish a system for continuing data collection in this particular patient population to assess outcome and quality of home care support and to follow incidence trends.