Home-based Pediatric Palliative Care Outcomes Study

项目总结 据估计，有特殊医疗需求的儿童占美国儿童的13%到18%。一个子群 这些儿童中有一些患有严重的危及生命的疾病(SLTI)，这种疾病可能有也可能没有 潜在的治愈或延长生命的治疗方法，但往往会导致死亡。而患有SLTI的儿童 寿命更长，每年约有15,000名儿童死于可能受益于特殊疾病的疾病 儿科姑息治疗。这些儿童越来越多地在家中得到照顾，并以家庭为基础的儿科 姑息治疗(HBPPC)在帮助SLTI儿童及其家庭花费更多方面发挥着更大的作用 通过促进跨医疗和社会服务提供商的跨学科护理，以及 环境，特别是在生命的准备阶段和最后阶段。然而，专家们担心， 这些儿童和家庭没有得到始终如一的高质量HBPPC，迫切需要 关于HBPPC的患者和家庭结果的标准化评估。以前没有病人-和家人- 已开发了已报告的结果工具，以专门评估和监测HBPPC的质量 因此，在美国，拟议的以家庭为基础的儿科姑息治疗结果(HBPPC-结果) 研究将开发和测试父母报告的结果工具，以衡量 通过三个具体目标在美国提高HBPPC的质量：1)减少90个家长报告的题库 关于HBPPC的结果，取自以前制定的结果衡量标准和文献审查，以 大约36个项目基于专家的重要性判断，使用离散选择实验 至少由32名国家PPC专家和4名专业家长组成的小组；2)对36人的精简集合进行排名 使用离散选择实验，根据父母对重要性的判断，将条目划分为大约18个条目 抽样30名其子女正在接受或已经接受HBPPC服务的父母；以及 执行认知访谈以评估按重要性排序的项目在 对其子女正在接受或已经接受HBPPC服务的20名父母进行了独立抽样。这个 拟议的工具将侧重于对Bainbridge等人的改编。S(2010)患者层面的结果领域：1) 体验，2)满足感，3)感知。只有通过评估和监测患者和家属 结果我们可以开始了解如何改善我们为SLTIs儿童提供的护理，并 他们的家人住在家里。这项拟议的研究是第一次开发一种工具来专门评估 HBPPC在美国的成果，并符合申请者的长期研究目标，以更好地理解和 提高对所有SLT感染儿童及其家人的护理质量，特别是那些 在家里生活的各个阶段。建议的研究和申请者的长期研究目标与 国家护理研究所推进高质量、循证发展的战略研究计划 姑息治疗，特别是对儿童和家庭的治疗。

PROJECT SUMMARY Children with special health care needs comprise an estimated 13 to 18 percent of U.S. children. A subgroup of these children are living with serious life-threatening illnesses (SLTIs), which may or may not have potential curative or life-prolonging treatments, but all-too-often result in death. While children with SLTIs are living longer, approximately 15,000 children a year die of conditions that could benefit from specialized pediatric palliative care. These children are increasingly being cared for at home, and home-based pediatric palliative care (HBPPC) is playing a greater role in helping children with SLTIs and their families spend more time at home through the facilitation of interdisciplinary care across medical and social service providers and settings, particularly in the period leading up to and at the very end of life. However, experts are concerned that these children and families are not receiving consistently high-quality HBPPC, and there is an urgent need for the standardized evaluation of patient and family outcomes regarding HBPPC. No previous patient- and family- reported outcome instruments have been developed to specifically evaluate and monitor the quality of HBPPC in the U.S. Therefore, the proposed home-based pediatric palliative care outcomes (HBPPC-Outcomes) study will develop and test a parent-reported outcome instrument to measure the core domains of quality HBPPC in the U.S. through three specific aims: 1) Reduce an item pool of 90 parent-reported outcomes regarding HBPPC, drawn from previously developed outcome measures and a literature review, to approximately 36 items based on expert judgments of importance using a discrete choice experiment with a panel of at least 32 national PPC experts and 4 “professional” parents; 2) Rank order the reduced set of 36 items to approximately 18 items based on parental judgment of importance using a discrete choice experiment with a sample of 30 parents whose children are receiving or who have received HBPPC services; and 3) Perform cognitive interviews to evaluate the relevance and clarity of the importance-rank-ordered items in an independent sample of 20 parents whose children are receiving or who have received HBPPC services. The proposed instrument will focus on an adaptation of Bainbridge et al.’s (2010) patient-level outcome domains: 1) experiences, 2) satisfaction, and 3) perceptions. Only by evaluating and monitoring patient and family outcomes can we begin to understand how to improve the care we provide to children with SLTIs and their families living at home. The proposed study is the first to develop an instrument to specifically evaluate HBPPC outcomes in the U.S., and fits within the applicant’s long-term research goals to better understand and improve the quality of care for all children with SLTIs and their families, particularly those who spend the last phase of life at home. The proposed study and the applicant’s long-term research goals align closely with the National Institute of Nursing Research’s strategic research plan to advance high-quality, evidence-based palliative care, particularly for children and families.