Discharge Practices for Children with Home Mechanical Ventilation across the United States. Key-Informant Perspectives

Abstract

Rationale: In 2016, the American Thoracic Society 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 U.S. practices adhere to these recommendations.Objectives: Hospital discharge practices and home health services are not standardized for children with invasive home mechanical ventilation (HMV). We assessed discharge practices for U.S. children with HMV.Methods: A survey of key-informant U.S. clinical providers of children with HMV, identified with purposeful and snowball sampling, was conducted. Topics included medical stability, family caregiver training, and discharge guidelines. Close-ended responses were analyzed using descriptive statistics. Responses to 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 survey responses from 59 providers, representing 44 U.S. states, included 49.2% physicians, 37.3% nurses, 10.2% respiratory therapists, and 3.4% case managers. A minority, 22 (39%) reported that 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 that 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, either because of insurance or durable-medical-equipment company barriers.Conclusions: This national U.S. survey of providers for HMV highlights heterogeneity in practice realities of discharging pediatric patients with HMV. Although 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.

Tracheostomy in infants with severe bronchopulmonary dysplasia: A review

“…Typically, these infants are followed by pediatricians who work collaboratively with dietitians. Most of these infants are discharged on gastrostomy tube feeding to optimize delivery of nutrition ( 30 , 57 , 58 ). The unique aspect of our medical home care model for infants with severe BPD and tracheostomy renders us the ability to optimize their nutritional support and manage any coexisting feeding problems, which are very common in this patient population ( 19 ).…”

Home nursing for children with home mechanical ventilation in the United States: Key informant perspectives

“…An abridged version for prior participants excluded Wave 1 demographic questions. The full Wave 2 survey focused on discharge practices and home care services for children requiring HMV; a separate report focuses on discharge practices and includes items related to other essential components of discharge: medical stability before discharge and parent training 18 . Institutional Review Board approval was obtained from the University of Chicago.…”

Transitioning children using home invasive mechanical ventilation from hospital to home: Discharge criteria, disparities, and ethical considerations

“…18 Some programs utilize specific respiratory criteria (e.g., ventilator settings, degree of oxygen dependence) for discharge with HIMV. 19 Regardless of the criteria used, it is critical that the home equipment safely supports the child both when healthy and during minor decompensations or respiratory illnesses. Special attention is needed for children with high ventilator pressure needs.…”