RE-PACT: Respiratory Exacerbation Plans for Action and Care Transitions for Children with Severe CP

RE-PACT：针对严重脑瘫儿童的行动和护理过渡的呼吸加重计划

• 批准号: 10625829
• 负责人: Ryan J Coller
• 金额: $ 23.31万
• 依托单位: UNIVERSITY OF WISCONSIN-MADISON
• 依托单位国家: 美国
• 财政年份: 2021
• 资助国家: 美国
• 起止时间: 2021-05-01 至 2025-04-30
• 项目状态: 未结题
• 来源: https://reporter.nih.gov/project-details/10625829
• 关键词: Accounting; Acute; Address; Age; Asthma; Attention; Behavior Therapy; California; Caregivers; Caring; Cerebral Palsy; Cessation of life; Child; Child Care; Childhood; Chronic; Chronic Obstructive Pulmonary Disease; Classification; Clinical; Complex; Data; Diagnosis; Disease; Effectiveness; Enrollment; Ethnic Origin; Event; Family; Focus Groups; Future; Geography; Goals; Health; Home; Hospitalization; Hospitalized Child; Hybrids; Intervention; Interview; Knowledge; Link; Measures; Mediating; Medical Care Costs; Meta-Analysis; Methods; Modeling; Monitor; Motivation; Motor; Outcome; Parents; Participant; Patients; Pediatric Hospitals; Pneumonia; Population; Population Heterogeneity; Preparation; Process; Public Health; Race; Randomized; Randomized, Controlled Trials; Replicating Effective Programs; Reporting; Respiratory Failure; Risk; Sampling; Series; Signal Transduction; Site; Spastic Tetraplegia; Specialist; Specific qualifier value; Structure; System; Testing; Text Messaging; Time; Wisconsin; acceptability and feasibility; active control; adaptive intervention; aspirate; care costs; clinical care; comorbidity; comparison control; congenital heart disorder; cost; design; disability; disorder control; efficacy trial; evidence base; experience; implementation/effectiveness; improved; improved outcome; intervention participants; intervention program; mHealth; mortality; parental monitoring; prevent; programs; respiratory; response; routine care; satisfaction; skills; socioeconomics; success; tool

PROJECT SUMMARY / ABSTRACT Respiratory illness is the leading cause of hospitalization and death in children with severe cerebral palsy (CP). Improving these outcomes is limited because interventions to help caregivers identify and manage them at the right time and context are absent. Severe respiratory illnesses, defined as respiratory diagnoses requiring hospitalization, begin in the children’s homes, where families are the first in line to manage these technically challenging and nuanced events. Caregivers report limited knowledge, skill, and confidence to handle them. To improve these respiratory mortality and hospitalization outcomes, parents need clinical teams to provide the right support, at the right time, in the right context, i.e., just-in-time and adaptive. Just-in-time adaptive interventions hold promise to help children with CP with respiratory illness. Our previously efficacious behavioral intervention gave families of children with complex illnesses, including CP, action plans and coaching to manage crises; however, plans were pre-specified, static, and did not adjust to real-time issues. To prevent severe respiratory illness in CP, responses must be dynamic, addressing the changing contexts and comorbidities that drive these illnesses. Moreover, clinicians and families need simple tools to signal when attention is most needed, which our mHealth platform was designed to accomplish. The aims of this application are to (1) refine and adapt the Respiratory Exacerbation Plans for Action and Care Transitions (RE-PACT) intervention program to severe respiratory illness for children with severe CP across two clinical programs with racial/ethnic and socioeconomic patient diversity; and (2) establish RE- PACT’s feasibility, acceptability and effect sizes in preparation for a future fully powered multisite randomized controlled trial of RE-PACT. We will also conduct exploratory analyses of the mediating influence of changes in caregiver capability, opportunity and motivation on intervention outcomes to test the theoretical intervention mechanism. Using the evidence-based Replicating Effective Programs adaptation framework, RE-PACT will add longitudinal mHealth surveillance of parent confidence to avoid hospitalization, triggering just-in-time action planning and coaching when confidence of low. Focus groups with target family and clinical teams caring for children with severe CP, and a national Design and Intervention Strategy expert group will guide intervention revisions. A sample of 90 caregivers of children with severe CP will then be randomized to receive RE-PACT or active control. Outcome data will be collected at 6 months using mixed methods to evaluate intervention: 1) feasibility, 2) acceptability, 3) fidelity, and 4) preliminary efficacy, measured by differences in severe respiratory illnesses compared to control. This intervention offers a high potential for widespread dissemination and scalability to address a key public health problem. Moreover, our long-term goal is to use severe CP as a model, further adapting RE- PACT to other high-priority conditions relying on families to rapidly handle exacerbations at home.

项目概要/摘要 呼吸系统疾病是严重脑瘫儿童住院和死亡的主要原因 （CP）。改善这些结果是有限的，因为帮助护理人员识别和管理这些结果的干预措施 缺乏正确的时间和背景。严重呼吸道疾病，定义为呼吸道诊断 需要住院治疗的，从儿童之家开始，那里的家庭是最先处理这些问题的 技术上具有挑战性和微妙的事件。护理人员报告他们的知识、技能和信心有限 处理他们。为了改善这些呼吸系统死亡率和住院结果，家长需要临床团队 在正确的时间、正确的背景下提供正确的支持，即及时和适应性的支持。 及时的适应性干预有望帮助患有呼吸道疾病的脑瘫儿童。我们的 以前有效的行为干预为患有复杂疾病（包括脑瘫）的儿童的家庭提供了帮助 管理危机的行动计划和指导；然而，计划是预先指定的、静态的，并且不会根据情况进行调整 实时问题。为了预防脑瘫患者的严重呼吸系统疾病，应对措施必须是动态的，解决 导致这些疾病的环境和合并症的变化。此外，临床医生和家庭需要简单的 在最需要关注时发出信号的工具，我们的移动医疗平台就是为了实现这一目标而设计的。 此应用程序的目的是 (1) 完善和调整呼吸恶化行动计划和 针对严重脑瘫儿童严重呼吸道疾病的护理过渡 (RE-PACT) 干预计划 跨越两个具有种族/民族和社会经济患者多样性的临床项目； (2) 建立 RE- PACT 的可行性、可接受性和效果大小，为未来的全动力多站点随机化做好准备 RE-PACT 的对照试验。我们还将对变化的中介影响进行探索性分析。 护理人员的能力、机会和动机对干预结果的影响，以测试理论干预 机制。使用基于证据的复制有效计划适应框架，RE-PACT 将 添加对家长信心的纵向移动健康监测，以避免住院，触发及时 信心低落时的行动计划和指导。目标家庭和临床团队的焦点小组 照顾患有严重脑瘫的儿童，国家设计和干预策略专家组将指导 干预修订。然后，90 名患有严重脑瘫儿童的护理人员将被随机分配接受 RE-PACT 或主动控制。将在 6 个月时收集结果数据，使用混合方法进行评估 干预：1) 可行性，2) 可接受性，3) 保真度，4) 初步效果，通过差异来衡量 与对照相比，出现严重呼吸道疾病。 这种干预措施具有广泛传播和可扩展性的巨大潜力，可以解决关键问题 公共卫生问题。此外，我们的长期目标是以严重CP为模型，进一步适应RE- 对其他高度优先的疾病采取 PACT 措施，依靠家庭在家中快速处理病情恶化。

项目成果

Barriers to and facilitators of a just-in-time adaptive intervention for respiratory illness in cerebral palsy: a qualitative study.

• DOI: 10.1136/bmjopen-2023-074147
• 发表时间: 2023-08-17
• 期刊: BMJ open
• 影响因子: 2.9

Adaptive Intervention to Prevent Respiratory Illness in Cerebral Palsy: Protocol for a Feasibility Pilot Randomized Controlled Trial.

• DOI: 10.2196/49705
• 发表时间: 2024-01-08
• 期刊: JMIR RESEARCH PROTOCOLS
• 影响因子: 1.7
• 作者: Fleischman, Alyssa;Lerner, Carlos;Kloster, Heidi;Chung, Paul;Klitzner, Thomas;Cushing, Christopher;Gerber, Danielle;Katz, Barbara;Warner, Gemma;Singh-Verdeflor, Kristina Devi;Delgado-Martinez, Roxana;Porras-Javier, Lorena;Ia, Siem;Wagner, Teresa;Ehlenbach, Mary;Coller, Ryan
• 通讯作者: Coller, Ryan