Long-Term Management for Ventilator-Assisted Children in Hong Kong: 2 Decades' Experience

BACKGROUND: The population of children receiving long-term mechanical ventilation is growing worldwide, but only limited data exist in Asian regions. The objective of the study was to review the management of these children in Hong Kong over the past 2 decades. METHODS: This was a retrospective cohort study. Hospital records from subjects receiving mechanical ventilation for >3 months were retrieved. Demographic characteristics and medical information of subjects (≤21 y old) under the care of the ventilator program at the Duchess of Kent Children's Hospital between 1997 and 2015 were reviewed. RESULTS: There were a total of 96 subjects, with male predominance (75%). Twenty-five subjects (26%) required invasive mechanical ventilation via tracheostomy, and the median age of starting ventilation was much lower than for subjects receiving noninvasive ventilation (1.6 vs 11.2 y, P .003). Underlying causes included neuromuscular diseases (50%); abnormal ventilatory control related to neurological, metabolic, or genetic conditions (25%); airway problems (18%); and chronic lung diseases (6%). Comorbidities were frequent, with significantly more subjects receiving invasive mechanical ventilation who required gastrostomy or nasogastric tube feeding and had intellectual impairment. Despite their medical complexities, most of our subjects (87.5%) could be discharged and resided in the community. Social reasons were the obstacles for discharge in 12 subjects receiving invasive mechanical ventilation. Seventeen subjects who died were receiving noninvasive ventilation, and most had progressive neuromuscular diseases. Only 8% subjects could be weaned off of ventilator support. At the time of the report, about one third of the subjects have reached adult age. CONCLUSIONS: Our study showed a steady growth in the number of children receiving long-term mechanical ventilation, similar to that in western countries, yet these children have distinct demographic characteristics, underlying diseases, comorbidities, and outcomes. Home care is feasible in the majority of these children despite a lack of in-home nursing care provision. Prolonged survival of these subjects necessitates the enhancement of transitional care to adult service.