Integrating clinician, caregiver and patient prioritized quality domains for home-based pediatric hospice and palliative care

目前儿科临终关怀和姑息治疗的研究主要集中在住院临终关怀和 姑息治疗环境，仍然在很大程度上由基于成人的数据和范例驱动， 不能充分满足儿童和青少年的临床重大需求。长期的 目标是设计基于家庭的儿科临终关怀和姑息治疗(PHBHPC)护理系统 为儿童、青少年和家庭量身定做高质量、目标一致的个性化护理。 该提案的总体目标是开发一套PHBHPC质量域 将新确定的以患者为优先顺序的观点与临床医生和 父母。中心假设是儿科患者会使用不同的语言来描述 他们关心的重要方面比供养者或父母更重要。这一假设建立在该团队的 之前的协作，使用Delphi流程，PHBHPC提供商通过该流程确定了两个 新领域：护理的连续性和丧亲。该团队随后对 接受PHBHPC的儿童的父母确定了另一个领域：同情关怀。这个 理由是，拟议的研究提供了儿童自身在 定义PHBHPC，并将他们的声音与照顾者和提供者整合，以告知 标杆管理和质量改进，项目开发和评估。为了 为了实现这一目标，将追求以下三个具体目标：1)建立和确定 儿童和青少年认为在PHBHPC中重要的因素；2)扩展和验证 现有提供者和照顾者数据集，以最大限度地提高代表性并最大限度地减少历史记录 威胁；以及3)将患者优先的因素与提供者和照顾者的因素结合在一起 PHBHPC质量领域的单一文件。拟议的研究是创新的，在 申请人的意见，因为这代表着与现状的实质性背离 从三个方面改变当前的研究范式。首先，所有利益相关者的观点是 收集和整合：PHBHPC患者、父母或其他照顾者和提供者。 其次，重点是PHBHPC，而不是住院临终关怀和姑息治疗。第三， 被美国国立卫生研究院指定为研究不足的人群的差距也得到了解决。这一贡献是 预计将具有重要意义，因为它将是第一个研究PHBHPC质量的集成所有 利益相关者的意见-患者、家庭和临床医生-通过以下方式提高科学质量 基准测试和数据共享、患者报告的结果衡量发展和未来 将护理提供与健康结果联系起来的研究。

Current research in pediatric hospice and palliative care focuses on inpatient hospice and palliative care settings and is still largely driven by adult-based data and paradigms, insufficiently addressing clinically significant needs of children and adolescents. The long-term goal is to design pediatric home-based hospice and palliative care (PHBHPC) care systems tailoring high-quality, goal-concordant, personalized care to children, adolescents, and families. The overall objective of this proposal is to develop a single set of PHBHPC quality domains integrating newly-identified, patient-prioritized perspectives with those from clinicians and parents. The central hypothesis is that pediatric patients will use different language to describe important aspects of their care than providers or parents. This hypothesis builds on the team’s prior collaboration, using a Delphi process through which PHBHPC providers identified two novel domains: Continuity of Care and Bereavement. This team’s subsequent study with parents of children receiving PHBHPC identified another domain: Compassionate Care. The rationale is that the proposed study provides the missing dimension of children themselves in defining PHBHPC, and integrates their voices with caregivers and providers to inform benchmarking and quality improvement, program development and evaluation. In order to achieve the objective, the following three specific aims will be pursued: 1) Establish and define factors children and adolescents identify as important in PHBHPC; 2) Extend and validate existing provider and caregiver datasets to maximize representativeness and minimize historical threat; and 3) Integrate patient-prioritized factors with those from providers and caregivers into a single document of PHBHPC domains of quality. The proposed research is innovative, in the applicants’ opinion, because it represents a substantive departure from the status quo by shifting current research paradigms in three ways. First, the perspectives of all stakeholders are collected and integrated: PHBHPC patients, parents or other caregivers, and providers. Second, the focus is on PHBHPC rather than on inpatient hospice and palliative care. Third, the gaps in populations designated by NIH as under-studied are addressed. This contribution is expected to be significant because it will be the first to study PHBHPC quality integrating all stakeholder input – patient, family, and clinician – enabling improved quality science through benchmarking and data sharing, patient-reported outcomes measure development, and future research to connect care delivery to health outcomes.