Publication
Differences in pain episodes among children with complex chronic conditions at end of life
Bogetz J, Phan M, Ayala E, Alayli Y, Johnston E, Ananth P, McGalliard J, Strub B, Bradford M, Rosenberg A · Journal of pain and symptom management · 2025
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.
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