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.