RESUMEN
BACKGROUND: Continuous tracheostomy mechanical ventilation users with Duchenne muscular dystrophy are institutionalized or have home nursing services (licensed practical nurse/registered nurse), whereas patients dependent on continuous noninvasive ventilatory support (CNVS) can avoid hospitalizations and publically paid services. DESIGN AND OBJECTIVE: This is a retrospective analysis comparing cost and physician effort for managing CNVS and continuous tracheostomy mechanical ventilation users with Duchenne muscular dystrophy. RESULTS: Compared with ongoing personal care, physician services and intercurrent hospitalization costs were negligible. Ten home continuous tracheostomy mechanical ventilation users had 16.4 hrs per day of licensed practical nurse/registered nurse care costing $269,370 per year; 14 were institutionalized at $237,350 per year; and 8 were decannulated to CNVS, with 5 subsequently returning home, costing only $9,800 per year for respiratory equipment. For 93 CNVS users, costs ranged from $9,800 per year for 37 without publically funded assistance, $44,968 per year for 3 with nurses' aides, $81,395 per year for 35 with unskilled personal assistance services, and $239,805 per year for 12 with licensed practical nurses/registered nurses. Twenty-eight became CNVS dependent without hospitalization or evaluation for home care. CONCLUSIONS: Noninvasive management permits cost-effective living at home but is disincentivized by fixed hospital diagnosis-related groups compensation that encourages rapid tracheotomy as well as expensive institutionalization and nursing care.
