Data Collection
General demographic data including primary diagnosis, gender, race,
housing location, number of people in household, and ventilator use,
were collected using a survey at time of enrollment as well as
retrospective chart review. Primary diagnoses were put into broader
categories to simplify analysis. These categories were: neuromuscular
disease which included neurologic, cerebral palsy, secondary paralysis,
myopathies, and muscular dystrophies; congenital anomaly: airway
anomaly, congenital cardiac defect; and control of breathing: congenital
central hypoventilation syndrome (CCHS), severe OSA, and rapid-onset
obesity with hypothalamic dysfunction, hypoventilation, and autonomic
dysregulation (ROHHAD). We performed a chart review on individual
patient records to obtain data on tracheal aspirate cultures,
hospitalizations, emergency department (ED) visits, time spent at
transitional rehab facility, and antibiotic usage. Participants were
categorized as either having a MDRO or never having MDRO on tracheal
aspirate. Information on any MDRO-positive tracheal aspirates were
collected including date of culture, whether it was collected during an
illness, polymorphonuclear (PMN) leukocytes abundance, and species of
organism. Some cultures were obtained for routine surveillance, but most
tracheal aspirates were obtained at physician’s discretion in response
to patient symptoms.