In a retrospective population-based analysis published in Pediatrics, the journal of the American Academy of Pediatrics, findings indicated that sociodemographic disparities in the intensity of end-of-life care for children with complex chronic conditions may play a factor in whether all children are recieving high-quality and/or end-of-life care consistent with their goals.
The most common CCCs included neuromuscular, malignancy and cadiovasuclar conditions.
The study reviewed data from 8,654 children with CCCs, ages 1 to 21, who died between 2000 and 2013 in the state of California. Significant findings included disparities associated with income, race/ethnicity, and age, leading researchers to be concerned that low-income, Hispanic children and adolescents were not receieving as good end-of-life care as their counterparts.
“We know that children with CCCs require a disproportionate amount of health-related services and care — often with high mortality rates — but very little up until now has been known or understood about the end-of-life care these vulnerable children get,” said Emily Johnston, M.D., M.S., the study’s lead author, an assistant professor in the University of Alabama at Birmingham Division of Pediatric Hematology-Oncology, and member of UAB’s Institute of Cancer Outcomes and Survivorship. “It’s urgent that we continue to gather data that outlines what the care disparities include, why care among populations varies — be it due to patient or family preferences or systemic issues such as access to palliative care — and ways to systematically equalize end-of-life care for all children with CCCs.”
Notably, 66 percent of children died in the hospital, with low-income neighborhood backgrounds and Hispanic-based ethnicities associated with hospital death, as opposed to the at-home or hospice care their counterparts received. That contrast indicates that children with CCCs from higher sociodemograhics received different end-of-life care — care that potentially better aligned with their goals.
As Johnston notes, future studies are necessary to determine how the disparities found in this article align with patient and family preferences, how to fill gaps in pediatric palliative care practices, and to determine streamlined processes to ensure care for all children with CCCs are met.