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).