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

摘要 每年有超过30，000个家庭做出“可怕的选择”，继续治疗，延长生命的治疗或 为患有严重疾病的儿童和青少年提供临终关怀。提高连续性和质量 在临终关怀方面，最近医疗补助规定的变化使儿科患者能够选择同时护理 - 在临终关怀中继续延长生命的治疗。不幸的是， 关于其改善以患者和家庭为中心的结果的有效性的证据正在减缓 并发护理率。我们的项目将通过开展一项 对行政数据进行复杂和方法上严格的分析，以建立一个独特的全国性的- 代表的数据集来自有史以来第一次纵向调查， 儿科并行护理与标准儿科临终关怀，以改善儿科和家庭的结果。 我们的项目的概念和技术创新，以审查儿科并行护理在于使用 具有复杂分析工具的跨学科专业知识（例如，工具变量分析和增量 成本分析），以创建一个独特的，具有全国代表性的数据集，提供有关相对 未经审查和联邦授权的临终干预。我们之前在儿科临终关怀方面的工作， 同时护理使我们能够提出有史以来第一个儿童和青少年同时护理研究， 2011年至2013年间的临终关怀，使用全国代表性的医疗补助数据。研究的目的是 比较：1）有效性（即，护理的连续性;症状管理），2）潜在负担（即， 临终关怀强度，护理碎片），和3）并行护理与标准临终关怀的成本， 儿童和青少年。我们假设同时护理与改善护理的连续性相关， 减少了非临终关怀症状管理，增加了提供者相关的负担，并降低了成本。这 拟议的研究，由一名早期研究人员领导，监督来自护理，医学和健康的学者 护理经济学，逻辑上建立在先前的NINR资助的K01研究检查儿科临终关怀。 我们的研究结果将扩大我们对儿科并行护理的理解，并将告知临床医生 和家庭的价值，这种干预的儿童和青少年。这一调查路线是意料之中的 最终改善儿童、青少年及其家庭在生命结束时的护理和结果。

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.