The study population (Table 1)
29 patients met criteria for inclusion in the chart review. They ranged in age from 0 to 19 years, with a median age of 1.7 years. Prior to admission, 16 children lived at home with their families, while 6 lived in a medical residence. 7 children had not yet lived in a place other than the acute care hospital. 9 patients received services from the New York State Office of Persons with Disabilities (OPWDD) and therefore required approval from NY State to limit life sustaining treatment. 10 children received some medical service in the home prior to admission.
Medically, the patients were heterogeneous in terms of underlying respiratory disorders and comorbidities. All were medically complex. Almost all (28/29) had more than one underlying respiratory diagnosis with most (19/29) having restrictive respiratory disease. Most (20/29) had some form of neuromuscular weakness contributing to respiratory dysfunction but only a couple (2/29) had degenerative neuromuscular disease. Common threads in comorbidities included cardiac diagnoses (18/29), genetic diagnoses (13/29) and static encephalopathy (12/29). Almost all (27/29) had swallowing dysfunction and most (22/29) had a gastrostomy and/or jejunostomy tube. Most (20/29) patients in this cohort were admitted at least once in the year prior to the admission reviewed; over a quarter (8/29) were admitted 3 or more times in that period.
Length of stay varied from 10 to 316 days with a mean of 76 days and a median of 38 days. The majority of the longer admissions reflected prolonged neonatal ICU stays. A tracheostomy was placed in 48% (14/29). Timing of tracheostomy ranged from 1 to 316 days post hospital admission, with a median of 22.5 days post admission. 25/29 of patients survived until discharge, with 21/29 surviving at least 6 months after admission. Of note, 7/8 of the children who did not survive 6 months after admission did not receive tracheostomies (2-sided p=0.035 Fisher’s exact test).