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hospice care, hospice enrollment, hospice length of stay, intellectual disability, Medicaid, pediatric hospice utilization



  1. Lindley, Lisa C. PhD, RN
  2. Colman, Mari Beth PhD
  3. Meadows, John T. Jr MD


More than 42,000 children die each year in the United States, including those with intellectual disability (ID). Survival is often reduced when children with ID also have significant motor dysfunction, progressive congenital conditions, and comorbidities. Yet, little is known about hospice care for children with ID. The purpose of this study was to explore the relationship between ID and hospice utilization. In addition, we explored whether ID combined with motor dysfunction, progressive congenital conditions, and comorbidities influenced pediatric hospice utilization. Using a retrospective cohort design and data from the 2009 to 2010 California Medicaid claims files, we conducted a multivariate analysis of hospice utilization. This study shows that ID was negatively related to hospice enrollment and length of stay. We also found that when children had both ID and comorbidities there was a positive association with enrolling in hospice care. A number of clinical implications can be drawn from the study findings that hospice and palliative care nurses use to improve their clinical practice of caring for children with ID and their families at end of life.