• Lisa C Lindley and Melanie J Cozad.
• College of Nursing, University of Tennessee, Knoxville, Tennessee. Electronic address: llindley@utk.edu.
• J Pain Symptom Manage. 2017 Sep 1; 54 (3): 298-304.

ContextChildren 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.ObjectivesThe 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.MethodsWe 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.ResultsTen 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).ConclusionsOur 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.Copyright © 2017 American Academy of Hospice and Palliative Medicine. Published by Elsevier Inc. All rights reserved.

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