Publication
Caring for chronically critically ill children in the pediatric cardiac intensive care unit: Correlations of a primary palliative care intervention with clinical outcomes
Rybka M, Cetin A, DeWitt A, Griffis H, Naim M, Walter J · Progress in Pediatric Cardiology · 2025
Background A growing number of pediatric patients admitted to the cardiac intensive care unit (CICU) meet the criteria of chronically critically ill (CCI), but there is little consensus on how to meet their distinct needs. A novel primary palliative care intervention, Chronic Care Rounds (CCR), was used to assess whether CCI patients with higher risk for mortality are being identified correctly. Objectives Exposure to primary palliative care intervention (CCR) will be associated with clinical characteristics and worse health outcomes of CCI patients in the CICU. Methods This retrospective cohort study evaluated patients admitted to a pediatric CICU for >14 days between 2014 and 2019. Demographics, clinical data, and whether patients received the primary palliative care intervention of interest, Chronic Care Rounds (CCR), were collected. CCR is a weekly interprofessional meeting to discuss a CCI patient, followed by a family meeting. Associations between clinical characteristics and CCR were analyzed using Chi-square/Fisher's exact and Wilcoxon rank sum tests. Results A total of 692 hospitalizations were identified, with 253 (37 %) receiving CCR. CCR patients were significantly more likely to have a syndrome diagnosis (42 % vs 32 %, p 0.007), extracardiac anomalies (47 % vs 39 %, p 0.042), chromosomal abnormalities (54 % v 36 %, p < 0.001), or list ‘Other’ as race compared to Caucasian (33 % v 23 %, p 0.001). The CCR group had a higher mortality rate (34 % vs 16 %, p < 0.001). The CCR group had higher rates of DNR in place compared to the non-CCR group (19 % vs 7 %, p < 0.001) as well as higher rates of sub-specialty palliative care involvement (49 % vs 23 %, p < 0.001). The two cohorts had similar rates of withdrawal of life sustaining technology (45 % vs 42 %, p 0.202). Conclusions This study showed that CCR successfully identified patients at higher risk for mortality and therefore greater need for communication with family.
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