Effectiveness of concurrent care to improve pediatric and family outcomes at the end of life: An analytic codebook

Implementation of the section 2302 of the 2010 Patient Protection and Affordable Care Act (ACA) enabled children enrolled in Medicaid/Children's Health Insurance Program with a prognosis of 6 months to live to use hospice care while continuing treatment for their terminal illness. Although concurrent hospice care became available more than a decade ago, little is known about the socio-demographic and health characteristics of children who received concurrent care; health care services they received while enrolled in concurrent care, their continuity, management, intensity, fragmentation; and the costs of care. The purpose of this study was to answer these questions using national data from the Centers of Medicare and Medicaid Services (CMS), which covered the first three years of ACA – from January 1, 2011, to December 31, 2013.The database included records of 18,152 children younger than the age of 20, who were enrolled in Medicaid hospice care in the sampling time frame. Children in the database also had a total number of 42,764 hospice episodes. Observations were excluded if the date of birth or death was missing or participants were older than 21 years. To create this database CMS data were merged with three other complementary databases: the National Death Index (NDI) that provided information on death certificates of children; the U.S. Census Bureau American Community Survey that provided information on characteristics of communities where children resided; CMS Hospice Provider of Services files and CMS Hospice Utilization and Payment files were used for data on hospice providers, and with a database of rural areas created by the Health Resources and Services Administration (HRSA). In total, 130 variables were created, measuring demographics and health characteristics of children, characteristics of health providers, community characteristics, clinical characteristics, costs of care, and other variables.

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