Care of children with home mechanical ventilation in the healthcare continuum

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ABSTRACT

Introduction

The care of children with invasive home mechanical ventilation (HMV) is challenging and insufficiently described in the literature. 

Objectives

Our objective regarding this unique and growing population is to describe our institution’s pediatric chronic HMV program and discuss our current understanding of best care practices. 

Methods

In addition to characterizing the clinical landscape of our program, we describe demographics for our roughly 223 current HMV patients with comparisons to available national data.  We discuss evidence and expert opinion regarding various elements of care including initiation of HMV, caregiver education, equipment concerns, inpatient care, and longitudinal care.

Results

Data was collected but not statistically analyzed for our roughly 223 current patients and historical cohort. Descriptive data included demographic information, patient medical characteristics and complexity, and reasons for rehospitalizations.

Conclusions

While we have provided institutional expertise regarding the care of this complex population, the evidence base remains insufficient and there are many areas which need future research to develop standardized care practice guidelines for children with HMV.

KEYWORDS:

• Pediatric
• home mechanical ventilation
• tracheostomy
• children with medical complexity
• multidisciplinary care

Abbreviations

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Acknowledgments

Data analysis provided by Jacob Wilkes and Sarah Abdelaziz

Disclosure Statement

No potential conflict of interest was reported by the author(s).

Transparency

Additional information

Funding

The authors have no funding to report.