The effectiveness of concurrent hospice care to improve pediatric and family outcomes at end of life

摘要

Abstract Each year over 30,000 families make the “terrible choice” to continue curative, life-prolonging therapies or utilize hospice care for their children and adolescents with serious illnesses. To improve continuity and quality of end-of-life-care, recent changes in Medicaid regulations enable pediatric patients to opt for concurrent care – the continuation of life-prolonging therapies while enrolled in hospice care. Unfortunately, the low level of evidence regarding its effectiveness to improve patient- and family–centered outcomes is slowing the uptake rate of concurrent care. Our project will provide this needed higher level evidence by conducting a sophisticated and methodologically rigorous analysis of administrative data to create a unique nationally- represented data set stemming from the first ever longitudinal investigation comparing the effectiveness of pediatric concurrent care versus standard pediatric hospice care to improve pediatric and family outcomes. The conceptual and technical innovation of our project to examine pediatric concurrent care lies in using interdisciplinary expertise with sophisticated analytic tools (e.g., instrumental variable analysis and incremental costs analysis) to create a unique, nationally represented data set providing important insight about a relatively unexamined and federally-mandated end-of-life intervention. Our prior work in pediatric hospice care and concurrent care allows us to propose the first-ever concurrent care study with children and adolescents in hospice care between 2011 and 2013, using nationally-represented Medicaid data. The study aims are to compare the: 1) effectiveness (i.e., continuity of care; symptom management), 2) potential burdens (i.e., hospice care intensity, care fragmentation), and 3) cost of concurrent care versus standard hospice care for children and adolescents. We hypothesize that concurrent care is associated with improved continuity of care, reduced non-hospice symptom management, increased provider-related burdens, and lowered costs. This proposed study, led by an Early Stage Investigator overseeing scholars from nursing, medicine, and health care economics, builds logically upon a prior NINR-funded K01 study examining pediatric hospice care. Findings from our study will expand our understanding of the pediatric concurrent care and will inform clinicians and families of the value of this intervention for children and adolescents. This line of investigation is expected to ultimately improve the care and outcomes for children, adolescents, and their families at end of life.