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.

当前在儿科临终关怀和姑息治疗方面的研究集中于住院临终关怀和 姑息治疗环境，仍然主要由成人数据和范式驱动， 无法满足儿童和青少年的临床意义需求。长期 目标是设计儿科家庭的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，目标符合人，个性化护理。 该提案的总体目的是开发一组PHBHPC质量域 将新识别的，患者优先的观点与临床医生和 父母。中心假设是儿科患者将使用不同的语言来描述 他们护理的重要方面比提供者或父母。这个假设建立在团队的 事先协作，使用PHBHPC提供商确定两个的Delphi流程 新领域：护理和丧亲的连续性。该团队随后的研究 接受PHBHPC的孩子的父母确定了另一个领域：富有同情心的护理。这 理由是拟议的研究提供了儿童本身缺失的维度 定义PHBHPC，并将他们的声音与看护人和提供者相结合，以告知 基准测试和质量改进，计划开发和评估。为了 实现目标，将追求以下三个特定目标：1）建立并定义 儿童和青少年在PHBHPC中认同重要的因素； 2）扩展和验证 现有的提供商和看护人数据集，以最大化表示并最大程度地减少历史 威胁; 3）将患者优先化的因素与提供者和护理人员的因素整合到一个 PHBHPC质量域的单个文件。拟议的研究是创新的，在 申请人的意见，因为它代表了与现状的实质性不同 以三种方式转移当前的研究范例。首先，所有利益相关者的观点是 收集和整合：PHBHPC患者，父母或其他护理人员和提供者。 其次，重点是PHBHPC，而不是住院临终关怀和姑息治疗。第三， NIH指定为未经研究的人群的差距已解决。这个贡献是 预计将是重要的 利益相关者的投入 - 患者，家庭和临床 - 通过 基准测试和数据共享，患者报告的结果测量以及未来 研究将护理交付与健康成果联系起来的研究。