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: 10398191
• 负责人: Ryan J Coller
• 金额: $ 23.64万
• 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 2024-04-30
• 项目状态: 已结题
• 来源: https://reporter.nih.gov/project-details/10398191
• 关键词: Accounting; Acute; Address; Age; Aspiration Pneumonia; Asthma; Attention; Behavior Therapy; California; Caregivers; Caring; Centers for Disease Control and Prevention (U.S.); Cerebral Palsy; Cessation of life; Child; Child Care; Childhood; Chronic; Chronic Obstructive Pulmonary Disease; Classification; Clinical; Complex; Custom; Data; Diagnosis; Disease; Effectiveness; Enrollment; Event; Family; Focus Groups; Future; Geography; Goals; Health; Home; Hospitalization; Hybrids; Intervention; Interview; Knowledge; Link; Measures; Mediating; Medical Care Costs; Meta-Analysis; Methods; Modeling; Monitor; Motivation; Motor; Outcome; Parents; Participant; Patients; Pediatric Hospitals; Population; Population Heterogeneity; Preparation; Process; Public Health; Randomized; Randomized Controlled Trials; Replicating Effective Programs; Reporting; Respiratory Failure; Risk; Sampling; Series; Signal Transduction; Spastic Tetraplegia; Specialist; Specific qualifier value; Structure; System; Testing; Text Messaging; Time; Wisconsin; active control; adaptive intervention; care coordination; care costs; clinical care; comorbidity; congenital heart disorder; cost; design; disability; disorder control; efficacy trial; evidence base; experience; improved; improved outcome; intervention participants; intervention program; mHealth; mortality; parental monitoring; prevent; programs; racial and ethnic; 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.

项目摘要 /摘要 呼吸道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，因为干预措施可以帮助看护人识别和管理它们 在正确的时间和上下文中，不存在。严重的呼吸道疾病，定义为呼吸诊断 需要住院，从儿童之家开始，那里的家庭是第一个管理这些的家庭 在技​​术上挑战和细微的事件。看护人报告有限的知识，技能和信心 处理它们。为了改善这些呼吸道死亡率和住院结果，父母需要临床团队 在正确的时间，正确的上下文，即及时和自适应，提供正确的支持。 及时的自适应干预措施有望帮助患有呼吸道疾病的儿童。我们的 以前有效的行为干预使包括CP在内的复杂疾病的儿童家庭 行动计划和管理危机的教练；但是，计划是预先指定的，静态的，并且没有适应 实时问题。为了防止CP严重的呼吸道疾病，反应必须动态，以解决 改变驱动这些疾病的环境和合并症。而且，临床医生和家庭需要简单 最需要注意的工具，我们的MHealth平台旨在实现这一目标。 本申请的目的是（1）完善和适应呼吸加剧计划的行动和 患有严重CP儿童的严重呼吸系统疾病的护理过渡（重新条纹）干预计划 在两个具有种族/种族和社会经济患者多样性的临床计划中； （2）建立重新 PACT的可行性，可接受性和效果大小，以准备将来完全有能力的多站点随机分组 对照试验的重新pact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，机会和动力进行干预结果测试理论干预 机制。使用基于循证的复制有效程序适应框架，重新pact将 添加对父母信心的纵向MHealth监视以避免住院，触发即时 当信心低时，行动计划和教练。与目标家庭和临床团队的焦点小组 照顾患有严重CP的儿童以及国家设计和干预策略专家小组将指导 干预修订。然后将有90名严重CP儿童的护理人员随机分配 重新pact或主动控制。结果数据将在6个月的时间使用混合方法来收集 干预：1）可行性，2）可接受性，3）保真度和4）初步效率，以差异为衡量 与对照相比，严重的呼吸道疾病。 这种干预措施为宽度传播和可扩展性提供了很高的潜力 公共卫生问题。此外，我们的长期目标是将严重的CP用作模型，进一步适应重新调整 依靠家庭在家中快速处理加剧的其他高优先级条件的协议。