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

整合临床医生、护理人员和患者的家庭儿科临终关怀和姑息治疗的优先质量领域

• 批准号: 10563294
• 负责人: Daniel Huck Grossoehme
• 金额: $ 44.26万
• 依托单位: CHILDREN'S HOSPITAL MED CTR OF AKRON
• 依托单位国家: 美国
• 财政年份: 2023
• 资助国家: 美国
• 起止时间: 2023-03-17 至 2026-02-28
• 项目状态: 未结题
• 来源: https://reporter.nih.gov/project-details/10563294
• 关键词: Acute; Address; Adolescent; Adolescent and Young Adult; Adult; Affect; Age; Ambulatory Care Facilities; Benchmarking; Bereavement; Caregivers; Caring; Cessation of life; Characteristics; Child; Child Care; Child Mortality; Childhood; Chronic Disease; Clinical Practice Guideline; Collaborations; Complement; Consensus; Continuity of Patient Care; Data; Data Set; Decision Making; Development; Dimensions; Dissemination and Implementation; Environment; Environmental Risk Factor; European; Family; Family Caregiver; Female; Focus Groups; Future; Gender; Geography; Goals; Guidelines; Health; Heterogeneity; Home; Hospice Care; Hospitals; Inpatients; Interview; Knowledge; Language; Life; Mission; Modeling; Ohio; Outcome; Outcome Measure; Palliative Care; Parents; Patient Care; Patient Outcomes Assessments; Patients; Persons; Population; Practice Guidelines; Process; Program Development; Program Evaluation; Provider; Psychosocial Assessment and Care; Public Health; Quality of Care; Quality of life; Race; Research; Research Personnel; Research Priority; Rural; Sampling; Science; Service provision; Site; Spirituality; Structure; Therapeutic; Translations; United States National Institutes of Health; Voice; care delivery; care providers; care systems; child services; clinically significant; community setting; data sharing; design; disability; end of life; end of life care; experience; improved; innovation; low socioeconomic status; novel; palliative; pediatric patients; pediatrician; personalized care; prospective; sexual minority; social factors; stakeholder perspectives; symptom management

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.

目前儿科临终关怀和姑息治疗的研究重点是住院临终关怀和 姑息治疗环境仍然主要由基于成人的数据和范式驱动， 未能充分满足儿童和青少年的长期临床重大需求。 目标是设计儿科家庭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制高质量、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、以患者为优先的观点与追随者和 中心假设是儿科患者会使用不同的语言来描述。 他们的护理比提供者或父母更重要。这一假设建立在团队的基础上。 之前的合作，使用德尔菲流程，PHBHPC 提供商通过该流程确定了两个 新颖的领域：护理和丧亲的连续性。 接受 PHBHPC 的儿童的父母确定了另一个领域：同情护理。 理由是，拟议的研究提供了儿童自身缺失的维度 定义 PHBHPC，并将他们的声音与护理人员和提供者结合起来，以告知 标杆管理和质量改进、计划开发和评估。 为了实现这一目标，将追求以下三个具体目标： 1) 建立和定义 儿童和青少年认为在 PHBHPC 中重要的因素 2) 扩展和验证 现有的提供者和护理人员数据集，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) 将患者优先考虑的因素与提供者和护理人员的因素结合起来 所提出的研究在 PHBHPC 质量领域具有创新性。 申请人的意见，因为它代表了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都是如此。 收集和整合：PHBHPC 患者、父母或其他护理人员以及提供者。 其次，重点是 PHBHPC，而不是住院临终关怀和姑息治疗。 NIH 指定为研究不足的人群的差距得到了解决。 预计意义重大，因为它将是第一个综合所有 PHBHPC 质量研究的项目 利益相关者的意见——患者、家属和临床医生——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 将护理服务与健康结果联系起来的研究。