Emily E Johnston1,2,3, Jori Bogetz4, Olga Saynina5, Lisa J Chamberlain6,7, Smita Bhatia2,3, Lee Sanders5,6. 1. Divisions of Pediatric Hematology/Oncology and ejohnston@peds.uab.edu. 2. Institute for Cancer Outcomes and Survivorship, School of Medicine and. 3. Division of Pediatric Hematology/Oncology, Department of Pediatrics, University of Alabama at Birmingham, Birmingham, Alabama; and. 4. Treuman Katz Center for Pediatric Bioethics, Seattle Children's Hospital and Research Institute and Division of Bioethics and Palliative Care, Department of Pediatrics, School of Medicine, University of Washington, Seattle, WA. 5. Policy, Outcomes, and Prevention and. 6. General Pediatrics, Department of Pediatrics, School of Medicine and Centers for. 7. Population Health Sciences, Stanford University, Palo Alto, California.
Abstract
BACKGROUND: Children with complex chronic conditions (CCCs) require a disproportionate share of health care services and have high mortality rates, but little is known about their end-of-life care. METHODS: We performed a retrospective population-based analysis using a California State administrative database of children aged 1 to 21 years with a CCC who died of disease-related causes between 2000 and 2013. Rates of and sociodemographic and clinical factors associated with previously defined inpatient end-of-life intensity indicators were determined. The intensity indicators included: (1) hospital death, (2) receipt of a medically intense intervention within 30 days of death (ICU admission, cardiopulmonary resuscitation, hemodialysis, and/or intubation), and (3) having ≥2 intensity markers (including hospital death). RESULTS: There were 8654 children in the study population with a mean death age of 11.8 years (SD 6.8). The 3 most common CCC categories were neuromuscular (47%), malignancy (43%), and cardiovascular (42%). Sixty-six percent of the children died in the hospital, 36% had a medically intense intervention in the last 30 days of life, and 35% had ≥2 intensity markers. Living in a low-income neighborhood was associated with increased odds of hospital death, a medically intense intervention, and ≥2 intensity markers. Hispanic and "other" race and/or ethnicity were associated with hospital death and ≥2 intensity markers. Age 15 to 21 years was associated with hospital death, a medically intense intervention, and ≥2 intensity markers. CONCLUSIONS: Sociodemographic disparities in the intensity of end-of-life care for children with CCCs raise concerns about whether all children are receiving high-quality and goal-concordant end-of-life care.
BACKGROUND:Children with complex chronic conditions (CCCs) require a disproportionate share of health care services and have high mortality rates, but little is known about their end-of-life care. METHODS: We performed a retrospective population-based analysis using a California State administrative database of children aged 1 to 21 years with a CCC who died of disease-related causes between 2000 and 2013. Rates of and sociodemographic and clinical factors associated with previously defined inpatient end-of-life intensity indicators were determined. The intensity indicators included: (1) hospital death, (2) receipt of a medically intense intervention within 30 days of death (ICU admission, cardiopulmonary resuscitation, hemodialysis, and/or intubation), and (3) having ≥2 intensity markers (including hospital death). RESULTS: There were 8654 children in the study population with a mean death age of 11.8 years (SD 6.8). The 3 most common CCC categories were neuromuscular (47%), malignancy (43%), and cardiovascular (42%). Sixty-six percent of the children died in the hospital, 36% had a medically intense intervention in the last 30 days of life, and 35% had ≥2 intensity markers. Living in a low-income neighborhood was associated with increased odds of hospital death, a medically intense intervention, and ≥2 intensity markers. Hispanic and "other" race and/or ethnicity were associated with hospital death and ≥2 intensity markers. Age 15 to 21 years was associated with hospital death, a medically intense intervention, and ≥2 intensity markers. CONCLUSIONS: Sociodemographic disparities in the intensity of end-of-life care for children with CCCs raise concerns about whether all children are receiving high-quality and goal-concordant end-of-life care.
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