Comparative Effectiveness of Usual Source of Care Approaches to Improve End-of-Life Outcomes for Children With Intellectual Disability.

CONTEXT

Children with intellectual disability (ID) are at risk for adverse end-of-life outcomes including high emergency room utilization and hospital readmissions, along with low hospice enrollment.

OBJECTIVES

The objective of this study was to compare the effectiveness of usual source of care approaches to improve end-of-life outcomes for children with ID.

METHODS

We used longitudinal California Medicaid claims data. Children were included who were 21 years with fee-for-service Medicaid claims, died between January 1, 2007, and December 31, 2010, and had a moderate-to-profound ID diagnosis. End-of-life outcomes (i.e., hospice enrollment, emergency room utilization, hospital readmissions) were measured via claims data. Our treatments were usual source of care (USC) only vs. usual source of care plus targeted case management (USC plus TCM). Using instrumental variable analysis, we compared the effectiveness of treatments on end-of-life outcomes.

RESULTS

Ten percent of children with ID enrolled in hospice, 73% used the emergency room, and 20% had three or more hospital admissions in their last year of life. USC plus TCM relative to USC only had no effect on hospice enrollment; however, it significantly reduced the probability of emergency room utilization (B = -1.29, P < 0.05) and hospital readmissions (B = -1.71, P < 0.001).

CONCLUSIONS

Our findings demonstrated that USC plus TCM was more effective at improving end-of-life outcomes for children with ID. Further study of the extent of UCS and TCM involvement in reducing emergency room utilization and hospital readmissions at end of life is needed.