Utilizing publicly available data to improve long-term quality of life following pediatric sepsis while fostering a new generation of sepsis investigators

项目摘要/摘要 社区获得性败血症休克是儿童死亡的一个主要原因，往往导致较差的长期疗效 幸存者的健康相关生活质量(HRQL)。儿童感染性休克后的长期HRQL可能是 受许多基线和临床因素的影响，这些因素尚未得到充分调查。长期的 这项研究的目的是改善儿童社区获得性败血症休克的预后。整体而言 目的：找出与感染性休克患儿临床病程相关的可调性因素，以及与感染性休克前期相关的因素。 可能影响长期发病率和死亡率的现有儿童或环境因素。中心假说 在儿科社区获得性败血症休克期间可识别的、可修改的因素可能会影响 感染性休克儿童的长期发病率和死亡率以及家庭风险 他们的照顾者存在功能障碍和心理困扰。这项研究的预期结果是新的 了解导致儿童败血症休克后不良儿童和家庭结局的因素。这 新的知识将产生积极的影响，因为它将为发展和 测试针对可修改因素的新干预措施。该项目的具体目标是：1)确定 与受损的长期功能状态和健康相关质量相关的基线特征 社区获得性败血症休克后儿童的生活质量。目标2)确定临床过程的各个方面 与儿童长期功能状态受损和健康相关的生活质量有关 在社区获得性败血症休克之后。目标3)确定与长期家庭功能有关的因素 儿童因社区获得性疾病住院后主要照顾者的心理困扰 感染性休克。解决这些目标的方法是与初级调查人员及其当地人员合作 来自几个学术机构的导师使用公开的 可用的数据集来自NIH资助的儿科脓毒症后生活评估(LAPSE)研究。初级调查员 将提供完整的生物统计学支持和来自儿科败血症专家的额外指导 和疏忽研究。这一贡献意义重大，因为它将为设计提供证据基础 确定的临床试验和开发的临床方案，解决可修改的因素，以优化护理和 改善感染性休克后儿童和家庭的长期结局。本文的研究具有创新性。 因为这将导致向初级调查人员介绍 使用已建立的公共用途数据库并为他们提供教育体验的好处 使用。

PROJECT SUMMARY/ABSTRACT Community-acquired septic shock is a major cause of death among children and often leads to poor long-term health-related quality-of-life (HRQL) among survivors. Long-term HRQL following pediatric septic shock may be affected by many baseline and clinical factors that have not yet been adequately investigated. The long-term goal of this research is to improve outcomes from pediatric community-acquired septic shock. The overall objective is to identify modifiable factors related to the clinical course of children with septic shock as well as pre- existing child or environmental factors that may impact long-term morbidity and mortality. The central hypothesis is that identifiable, modifiable factors during pediatric community-acquired septic shock may affect the risk of long-term morbidity and mortality among children encountering septic shock, as well as the risk of family dysfunction and psychological distress among their caregivers. The expected outcomes of the research are new knowledge about factors contributing to adverse child and family outcomes following pediatric septic shock. This new knowledge will have a positive impact because it will provide an evidence-base for the development and testing of new interventions targeted at modifiable factors. The specific aims of this project are Aim 1) Identify baseline characteristics that are associated with impaired long-term functional status and health-related quality of life among children following community-acquired septic shock. Aim 2) Identify aspects of the clinical course that are associated with impaired long-term functional status and health-related quality of life among children following community-acquired septic shock. Aim 3) Identify factors associated with long-term family functioning and psychological distress of the primary caregiver following their child’s hospitalization for community-acquired septic shock. The approach to address these aims is to collaborate with junior investigators and their local mentors from several academic institutions to answer important questions about pediatric sepsis using a publicly available dataset from the NIH-funded Life After Pediatric Sepsis Evaluation (LAPSE) study. Junior investigators will be provided with complete biostatistical support and additional mentorship from experts in pediatric sepsis and the LAPSE study. This contribution is significant because it will provide an evidence basis for designing definitive clinical trials and developing clinical protocols that address modifiable factors to optimizing care and improving long-term child and family outcomes following septic shock. The research proposed is innovative because it will result in a substantial departure from the status quo by introducing junior investigators to the benefits of using established public use databases and providing them with an educational experience in their use.