Differences in Pain Episodes Among Children With Complex Chronic Conditions at End of Life

Abstract

Objective: This study examined disparities in pain episodes at end-of-life (EOL) among children with complex chronic conditions (CCCs).

Methods: This was a retrospective study of children and young adults ages 0-25 years who died in-hospital at a U.S. academic institution between January 2021 and December 2024. Demographic data and pain scores (0 = no pain to 10 = worst pain) from the electronic health record were automatically abstracted. Exploratory analyses included descriptive statistics and Pearson's chi square tests.

Results: Among 482 children, 50% (n = 243) were infants, 31% (n = 148) were children 1-12 years, 13% (n = 62) were adolescents 13-17 years, and 6% (n = 29) were young adults ≥18 years. 55% (n = 264) were male, 47% (n = 202) were white, 18% (n = 88) were Hispanic, and 18% (n = 81) preferred a language other than English. 70% (n = 339) had congenital/genetic, neurologic/neuromuscular, and/or metabolic CCCs; 22% (n = 104) had malignancy; 22% (n = 107) had hematologic/immunologic CCCs; and 16% (n = 78) had respiratory CCCs. 87% (n = 420) died in the intensive care unit (ICU). In the last 3 days of life, 60% (n = 276) had at least one moderate-to-severe pain score ≥4 and, of those, 32% (n = 148) had at least one severe pain score ≥7. We observed a higher proportion of children with severe pain episodes among adolescents/young adults, Hispanics, those who preferred a language other than English, those with malignancy, hematologic/immunologic, and respiratory CCCs, and those who died in the ICU.

Conclusion: Moderate-to-severe pain episodes were present in >50% of children with CCCs in the last 3 days of life. The proportion differed based on demographic factors reflecting known health disparities.

Keywords: Pediatric; complex chronic conditions; end-of-life; palliative care; quality improvement.