Feasibility of a care team-focused action plan to improve quality of care for children and adolescents with inflammatory bowel disease

项目概要 由于护理协调和沟通方面的差距，慢性病青少年的护理质量受到影响 多个医疗保健提供者之间。由于炎症性肠病（IBD）患者有预防和 急性护理需求超出同行，IBD 提供了一个很好的用例来评估干预措施 加强协调，提高质量。电子健康记录 (EHR) 的潜力在很大程度上尚未发挥出来 促进提供者和家庭团队之间的协调。该项目利用基于网络和移动 电话应用程序接入点可共享来自 IBD 中心 EHR 的患者特定信息。干预， myIBDplan 是根据患者、家属和医疗服务提供者的系统意见制定的。我们的目标是 评估向家庭和护理团队提供有关 IBD 相关健康需求的定制指导的可行性 会员使用低成本、低风险的健康传播创新来增强现有的健康信息 技术。理由是 IBD 专家为家庭提供简短、可操作、个性化的指导 和其他提供者将支持有关寻求和提供及时预防性和急性护理的决定。 尽管干预措施建立在先前的工作和证据的基础上，并且已经过试点测试，但它需要可行性 在大规模评估之前进行实践测试。我们将通过试点评估 myIBDplan 的可行性 在一个地点进行随机对照试验（n=60）。本研究有三个研究目的：（1）评估可行性 推广有效性试验设计； (2) 评估实施 myIBDplan 的可行性和可接受性 儿科 IBD 诊所； (3) 探索 myIBDplan 改善 (a) 收集的护理质量指标的可行性 参与者和 EHR 以及 (b) 患者自我管理。在目标 1 中，我们将评估受试者招募， 使用研究日志对对照受试者进行随机化、保留、干预完成和污染。对于 目标 2，我们将通过访谈和调查来了解 IBD 诊所采用的障碍和促进因素，以及 从患者/家属和护理提供者的角度来看的可接受性和适当性。对于目标 3，我们 将使用调查和医疗记录数据来探索家庭报告的护理质量、患者的护理质量随时间的变化 自我管理，并完成指南支持的儿科 IBD 干预质量指标 和对照组，这可能是后续随机试验的终点。该项目的创新之处在于 寻求改变照顾同一个孩子的提供者共享信息和地址的默认方式 共同的责任。 MyIBDplan 针对明确描述的有效协调障碍并纳入 个体定制、家庭参与、专家建模和简化流程的行为策略 信息传递并增强其相关性、可访问性和可操作性。拟议的研究是 意义重大，因为它有可能通过低成本干预措施来改善健康状况，以加强现有资源的利用 卫生信息技术。该研究的结果可以为电子病历支持的质量提供一个框架 通过学习卫生系统研究来改善一系列儿童期发病的慢性疾病。

Project Summary Quality of care for youth with chronic disease suffers because of gaps in care coordination and communication among multiple health care providers. As patients with inflammatory bowel disease (IBD) have preventive and acute care needs beyond those of peers, IBD provides an excellent use case to evaluate interventions to enhance coordination and improve quality. Electronic health records (EHRs) have largely unfulfilled potential to facilitate coordination among teams of providers and families. This project leverages web-based and mobile phone app access points to share patient-specific information from the IBD center’s EHR. The intervention, myIBDplan, has been developed with systematic input from patients, families, and providers. Our objective is to assess the feasibility of delivering tailored guidance on IBD-related health needs to families and care team members using a low-cost, low-risk health communication innovation that enhances existing health information technology. The rationale is that brief, actionable, individually tailored guidance from IBD specialists to families and other providers will support decisions about seeking and providing timely preventive and acute care. Though the intervention builds on prior work and evidence and has been pilot tested, it requires feasibility testing in practice prior to large-scale evaluation. We will assess feasibility of myIBDplan through a pilot randomized, controlled trial at one site (n=60). The study has three research aims: (1) assess the feasibility of a rollout effectiveness trial design; (2) assess the feasibility and acceptability of implementing myIBDplan in a pediatric IBD clinic; (3) explore the feasibility of myIBDplan to improve (a) care quality measures collected from participants and the EHR and (b) patient self-management. In Aim 1, we will assess subject recruitment, randomization, retention, intervention completion, and contamination of control subjects using a study log. For Aim 2, we will use interviews and surveys to learn about barriers and facilitators of adoption by IBD clinics and acceptability and appropriateness from the perspectives of patients/families and care providers. For Aim 3, we will use surveys and medical record data to explore change over time in family-reported care quality, patient self-management, and completion of guideline-supported quality indicators for pediatric IBD for intervention and control groups, which could be endpoints in a subsequent randomized trial. This project is innovative in seeking to change the default ways that providers caring for the same child share information and address shared responsibilities. MyIBDplan targets well-described barriers to effective coordination and incorporates behavioral strategies of individual tailoring, family participation, expert modeling, and facilitation to streamline information delivery and enhance its relevance, accessibility, and actionability. The proposed study is significant because of its potential to improve health through a low-cost intervention to enhance use of existing health information technology. The study’s findings could provide a framework for EHR-supported quality improvements through learning health system research across a range of childhood-onset chronic diseases.