PM2019: Inpatient Utilization, Costs, and Disparities for Children with Complex Chronic Conditions in the Last Year of Life

Background: Hospital use in the last year of life varies across conditions for children with complex chronic conditions (CCCs). Little is known about sociodemographic disparities in inpatient utilization in the last year of life, which is critical for resource planning and end-of-life care equity.

Methods: We conducted a population-based retrospective analysis using the California Office of Statewide Health Planning and Development private inpatient discharge database to examine the last year of life for children (1-21y) with CCCs. We included children with a CCC who died from a disease-related cause between 2005 and 2018. Inpatient days, costs (2018 US dollars), number of admissions, and number of admissions with ICU-level care (identified via ICD-9/ICD-10 codes for ICU-related procedures such as intubation) in the last year of life were determined. We examined the association between sociodemographic/clinical factors and being in the top 20% of utilizers for 1) inpatient days, 2) inpatient costs, and 3) number of admissions using multivariable regression analysis.

Results: The 4,995 children died at a mean age of 13y (SD=7). The majority were male (57%) and publicly insured (67%) (Table 1). The largest racial/ethnic group was Hispanic (49%), followed by non-Hispanic white (28%), and black (10%). The most common CCC categories were neuromuscular (47%), cardiovascular (36%), and gastrointestinal (29%); 40% had ≥ 3 CCCs. They spent a mean of 57.3 days (SD=75.6) in the hospital over a mean of 3.8 admissions (SD=3.6) with a mean of 1.0 admissions with ICU-level care (SD=0.9) in the last year of life. Mean inpatient costs were $313,057 (SD=$421,601). Inpatient costs and length of stay slowly increased over the first six months and then steeply increased in the last month before death. (Figure 1). Private and HMO insurance were associated with lower risk of being a high utilizer for inpatient days (aOR=0.69 [95% CI: 0.55-0.85]; aOR= 0.54 [95% CI: 0.41-0.71]; reference, public insurance, respectively) and private insurance was associated with lower costs (aOR=0.76 [95% CI: 0.61-0.95]; reference, public insurance). Hispanic ethnicity was associated with high admission utilization (aOR=1.26 [95% CI: 1.02-1.56]; reference, non-Hispanic white). Median household income ≥4 times the federal poverty level was associated with being a high cost utilizer (aOR = 1.40 [95% CI: 1.01-1.95]; reference, < 2 times the federal poverty level).

Conclusion: Children with CCCs in California exhibited high inpatient costs and utilization in the last year of life, especially as they approached death, with significant sociodemographic variation. It is critical to determine if this variation represents patient preferences, provider biases, or systemic factors such as resource availability.