Advancing neonatal complex care : a descriptive analysis of neonates with complex medical needs pre and post introduction of a specialized care team

Rationale: Most of the research into children with medical complexity has been done in the non-neonatal pediatric populations. This thesis aimed to assess the available models of care for neonates with complex medical needs (NCMN) and to describe the medically complex neonatal patient population at a provincial tier 6 neonatal intensive care unit (NICU) within a large pediatric hospital. Additionally, we aimed to compare the NCMN cared for by the neonatal complex care team (NCCT) to the patient population cared for in the NICU without complex medical needs. Methods: A scoping review was completed to determine the outcomes of interest for assessment of the impact of a complex care team on the health outcomes of NCMN. Next, a retrospective descriptive study was conducted of the neonatal population pre-implementation, with a cohort analysis comparing children with and without medical complexity post-implementation of the NCCT. We investigated primary diagnosis for complexity and evaluated resource use at discharge. The primary outcome of interest was length of stay (LOS). Results: Through the scoping review, LOS and readmission rate were identified as the most relevant primary outcomes of interest for the clinical program evaluation. For the retrospective analysis, a total of 5112 neonates were included, including 2469 neonates from the pre-NCCT implementation period, and 2643 neonates in the post-NCCT implementation period. From the post-implementation period, we compared 84 NCMN to 2559 neonates without complex medical needs (NWCMN). The most common underlying diagnoses in NCMN were extreme prematurity and related complications. NCMN had longer LOS as compared to NWCMN (median 135 days vs. 10 days; p<0.001), and 97.5% of NCMN needed technology or medical resources at discharge, including home mechanical respiratory support and tube feeding support. Conclusions: NCMN are an underrepresented patient population in pediatric research and there are significant unknowns in regards to models of care and best practices. We found that NCMN experienced longer hospital stays as compared to NWCMN, and showed high needs for technology or other complex medical resources at hospital discharge. Medical complexity contributes to a complicated prognosis for many of these infants and further research is needed into long-term outcomes.