Cost and physician effort analysis of invasive vs. noninvasive respiratory management of Duchenne muscular dystrophy.

Abstract

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. This is a retrospective analysis comparing cost and physician effort for managing CNVS and continuous tracheostomy mechanical ventilation users with Duchenne muscular dystrophy. 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. 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.