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Design and Participants: This population-based retrospective cohort study used Ontario health administrative data on children born between 2002 and 2019 who had an SNI diagnosis code before age 16 and a first PICU-CIE from 2002 to 2019 to assess the association between number of recent PICU-CIEs and survival. The primary outcome was 1-year survival conditioned on the number and severity (length of stay more than 15 days or use of invasive mechanical ventilation) of PICU-CIEs in the preceding year. Cox proportional hazards regression was used.
Results: In all, 4,774 children (mean age=2.1 months [SD=3.6]; 55% less than 1 year old; 55% boys) were discharged alive between 2002 and 2019 after their first PICU-CIE. Ten-year survival after the initial episode was 81% (95% CI=79%-82%) for children younger than 1 year old and 84% (82%-86%) for children 1 year old or older; the age-stratified curves converged by 15 years after the initial episode at 79% survival (95% CI=78%-81% for children less than 1 year old and 75%-84% for children 1 year old or older). Adjusted for age category and demographics, the presence of non-neurologic complex chronic conditions (adjusted hazard ratio [AHR]=1.7 [1.4-2.0]) and medical technology assistance (AHR=2.3 [1.9-2.8]) were associated with increased mortality. Conditional 1-year mortality was less than 20% regardless of number or severity of recent PICU-CIEs. Among children with high-risk PICU-CIEs, 1-year conditional survival decreased 90% (89%-91%) after the first PICU-CIE to 81% (77%-86%) after the fourth.
Commentary: This retrospective population-based study shows that more than 80% of children with SNI admitted to the PICU survive more than 1 year after discharge. However, how PICU admissions impact quality of life remains unknown. This is crucial information, as children with SNI represent a large portion of the chronically critically ill children that pediatric palliative care (PPC) support. PPC can carry the story of these children and their families through and between ICU admissions and advocate for therapies, interventions, and hospital stays that align with stated goals of care. At the same time, deep longitudinal PPC relationships facilitate iterative assessment of familial perceptions of quality of life and how PICU admissions may be impacting those.
Bottom Line: PPC providers can advocate for goal-concordant care for children with SNI, acknowledging that PICU admissions may or may not significantly impact life expectancy and that more information is needed on how PICU stays impact quality of life.
Reviewer: Ross W. Cleveland, MD, Dana-Farber Cancer Institute/Boston Children’s Hospital, Boston, MA
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Source: Nelson KE, Zhu J, Thomson J, et al. Recurrent intensive care episodes and mortality among children with severe neurologic impairment. JAMA Netw Open. 2024;7(3):e241852. doi:10.1001/jamanetworkopen.2024.1852.
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