Discharge Practices for Children with Home Mechanical Ventilation Across the United States: Key Informant Perspectives

RATIONALE In 2016 the ATS released Clinical Practice Guidelines for Pediatric Chronic Home Invasive Ventilation pertaining to discharge practices and subsequent management for patients with invasive ventilation using a tracheostomy. It is not known to what extent current US practices adhere to these recommendations. OBJECTIVE Hospital discharge practices and home health services are not standardized for children with invasive home mechanical ventilation (HMV). We assessed discharge practices for US children with HMV. METHODS Survey of key-informant, U.S. clinical providers of children with HMV, identified with purposeful and snowball sampling. Topics included medical stability, family caregiver training, and discharge guidelines. Close-ended responses were analyzed using descriptive statistics. Open-ended questions were analyzed using open-coding with iterative modification for major theme agreement. RESULTS Eighty-eight responses were received from 157 invitations. Eligible surveys from fifty-nine providers, representing 44 U.S. states, were 49.2% physicians, 37.3% nurses, 10.2% respiratory therapists, and 3.4% case managers. A minority, twenty-two (39%) reported their institution had a standard definition of medical stability; the dominant theme was no ventilator changes 1-2 weeks before discharge. Nearly all respondents' institutions (94%) required caregivers demonstrate independent care; the majority (78.4%) required two trained HMV caregivers. Three-fourths described codified discharge guidelines, including the use of a discharge checklist, assurance of home care, and caregiver training. Respondents described variable difficulty with obtaining durable medical equipment (DME), either due to insurance or DME company barriers. CONCLUSION This national US survey of providers for HMV highlights heterogeneity in practice realities of discharging pediatric patients with HMV. While no consensus exists, defining medical stability as no ventilator changes 1-2 weeks before discharge was common, as was having an institutional requirement for training two caregivers. Identification of factors driving heterogeneity, data to inform standards, and barriers to implementation are needed to improve outcomes.