Comparative Effectiveness of Usual Source of Care Approaches to Improve End-of-life Outcomes for Children with Intellectual Disability

Comparative Effectiveness of Usual Source of Care Approaches to Improve End-of-life Outcomes for Children with Intellectual Disability

Lindley LC; Cozad MJ

10.1016/j.jpainsymman.2017.06.007

Journal Of Pain and Symptom Management

2017

Case Management; Comparative Effectiveness; Emergency Room Utilization; Hospital Readmissions; Intellectual Disability; Pediatric Hospice Care; Usual Source Of Care

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. We included children who were less than 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 versus 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% utilized the emergency room, and 20% had 3 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.

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