Pediatric Palliative Care Research Network SHARE Project

 描述（由申请人提供）：儿科姑息治疗（PPC），专注于照顾患有严重疾病的儿童及其家人，在过去十年中发展迅速。尽管取得了这些进展，但该领域仍在努力收集和分析足够数量的高质量数据，以指导个体患者的PPC治疗和决策，以及为人口层面的PPC政策提供信息的成本数据。因此，儿科姑息治疗研究网络（PPCRN）建议在美国4家大型儿童医院建立一个由800名PPC患者组成的前瞻性队列，这些患者开始或继续接受基于医院的PPC团队的护理，重点关注3项相关任务。首先，我们将创建一个共享的前瞻性收集的临床数据库。我们将召集一个PPCRN共享数据和研究（SHARE）委员会，该委员会将监督要收集的数据的规格，数据收集和输入研究标准数据库的过程，以及由此产生的数据源的管理和使用。SHARE数据将包括患者人口统计学和诊断信息;患者（或父母，如果患者无法回答）报告的症状;护理目标和目标随时间的变化（重新设定目标）;以及PPCRN SHARE委员会商定的其他数据元素。其次，我们将整合前瞻性临床数据与医院管理数据（包括医院成本以及日常医院护理的许多其他详细方面），来自美国儿童医院联盟。复合SHARE数据库将为该患者队列提供大量关于医院护理的信息。第三，我们将使用SHARE数据来研究所有儿童成本、结局、基于医院的利用和非利用轨迹（PPC-ACH-T）的PPC模式，解决3个假设：H1：患者症状、父母痛苦和护理目标随时间存在不同的变化模式。 H2：这些轨迹彼此相关，并与医院成本轨迹相关。 H3：早期接受PPC可改善患者症状和父母痛苦，并降低住院费用。这项创新的PPC多中心研究将：1）对接受PPC服务的儿童及其父母中最普遍和最令人痛苦的症状进行严格，全面的描述，2）显著提高对儿童症状，父母症状和压力之间关系的理解，以及基于医院的医疗保健利用，3）为未来的PPC研究者创建前瞻性的多中心数据源和研究基础设施资源。

 DESCRIPTION (provided by applicant): Pediatric palliative care (PPC), focused on the care of children with serious illnesses and their families, has developed dramatically over the past decade. Despite these developments, the field struggles with an underdeveloped capacity to gather and analyze a sufficient amount of high-quality data to guide PPC treatment and decision-making for individual patients, and cost data to inform PPC policy at the population level. Accordingly, the Pediatric Palliative Care Research Network (PPCRN) proposes to create a prospective cohort of 800 PPC patients initiating or continuing care with well-established hospital-based PPC teams at 4 large children's hospitals across the United States, focusing on 3 related tasks. First, we will create a shared prospectively collected clinical database. We will convene a PPCRN SHAred Data and REsearch (SHARE) Committee, which will oversee the specification of data to be collected, the process of data collection and entry into a research-standard database, and management and use of the resulting data source. SHARE data will include patient demographic and diagnostic information; patient (or parent, if patient cannot answer) reported symptoms; goals of care and changes of goals over time (regoaling); and other data elements agreed upon by the PPCRN SHARE Committee. Second, we will integrate the prospective clinical data with hospital administrative data (including hospital costs as well a many other detailed aspects of daily hospital care) from a consortium of children's hospitals in the United States. The composite SHARE database will provide a wealth of information regarding hospital-based care for this cohort of patients. Third, we will use SHARE data to study PPC patterns of All Children Costs, Outcomes, Hospital- based Utilization and Non-utilization Trajectories (PPC-ACCOUNT), addressing 3 hypotheses: H1: Distinct patterns of change over time exist for patient symptoms, parent distress, and goals of care. H2: These trajectories are related to each other and to hospital cost trajectories. H3: Early receipt of PPC ameliorates patient symptoms and parent distress, and lowers hospital costs. This innovative multicenter study of PPC will 1) provide a rigorous, comprehensive description of the most prevalent and distressing symptoms among both children and their parents receiving PPC services, 2) significantly advance understanding of the relationships between children's symptoms, parental symptoms and stress, and hospital-based health care utilization, and 3) create a prospective multicenter data source and research infrastructure resources for future PPC investigators.