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

Objective: The aim of the present study was to identify the number of child ren, 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 (pulmonolo gists), intensive care specialists, neurologists, national health care orga nisations, rehabilitation services and ventilator suppliers known or though t to be involved in paediatric long-term ventilation in Switzerland. Results: Detailed information was obtained on 32 children from 7 centers. U nderlying disorders included congenital central hypoventilation syndrome (C CHS, 41%), neuromuscular disorders (41%), spinal cord injury (6%), craniofa cial anomalies (6%) and others (6%). 10 children received positive pressure ventilation by tracheostomy and 19 children by nasal mask. Two children we re ventilated by phrenic nerve pacing and one child with the help of a pneu matic 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 i n 3 children. All but 2 children were cared for at home. The majority of fa milies received home care support. The most common reasons for readmission into hospital a ere regular follow-up examinations and respiratory tract in fections. The children were mainly admitted to paediatric intensive care un its. Conclusions: There are few ventilator-supported children in Switzerland and most of them are cared for at home. Nevertheless, there is a need to estab lish a system for continuing data collection in this particular patient pop ulation to assess outcome and quality of home care support and to follow in cidence trends.