Perinatal palliative care: a dedicated care pathway

Abstract

BACKGROUND AND PURPOSE: Illness severity among children with life-limiting illnesses is measured with the pediatric complex chronic conditions (CCC) measure. Developed in 2000/2001, it was revised in 2014 to include infant-specific categories., METHODS: Discrimination, calibration, accuracy, and validation tests were used to examine the predictive performance of the measures., RESULTS: Among the 10,175 infants in the analysis, both measures poorly discriminated-palliative care consultation (C-statistics 0.6396 vs. C-statistics 0.5905) and any inpatient procedure (C-statistics 0.6101 vs. C-statistics 0.5160). The Hosmer-Lemeshow goodness-of-fit tests revealed good calibration for both measures. The original measure was more accurate in predicting end-of-life outcomes-palliative care consultation (Brier Score 0.3892 vs. 0.7787) and any inpatient procedures (Brier Score 0.3115 vs. 0.4738)., CONCLUSIONS: The revised measure did not perform any better than the original in predicting end-of-life outcomes among infants. © Copyright 2021 Springer Publishing Company, LLC.