Quality of Care in the Last Two Years of Life for Children with Complex Chronic Conditions.

CONTEXT: Limited data exists about care received by children with complex chronic conditions (CCCs) in the final years of their disease and end-of-life (EOL).

OBJECTIVE: To examine hospital performance on EOL quality measures and to describe healthcare services during the last two years of life for children with CCCs who died in-hospital.

METHODS: Retrospective automated electronic health record review of children with ≥1 CCC ICD-10 diagnosis code, who died inpatient between October 2020-March 2023 at a single quaternary U.S. children's hospital. Quality was assessed based on performance on 15 measures across 5 domains: healthcare utilization, interprofessional supports, medical intensity, symptom management, and communication. Quality EOL care and healthcare services in the last two years of life were determined overall by age group and per patient. Descriptive statistics were used to evaluate demographic differences by age.

RESULTS: 266 children with CCCs died in the study timeframe; 45% were infants (n=120), 52% (n=137) were male, 42% (n=113) were white, 64% (n=170) were non-Hispanic, and 59% (n=156) had public insurance. Children had a median of 3 CCCs (IQR 2.4; range 1-8). On average, children met 69% (SD 13%) of EOL quality measures for which they were eligible. In the 2 years prior to death, 98% (n=261) had an ICU admission, 75% (n=200) had a procedure requiring sedation, and 29% (n=79) had received cardiopulmonary resuscitation. 86% (n=229) died in the ICU.

CONCLUSION: In this study, children with CCCs met 69% of quality measures and received high-intensity healthcare in the last 2 years of life.