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

项目摘要 由于护理协调和沟通方面的差距，慢性病青年的护理质量受到影响 在多个医疗保健提供者中。由于炎症性肠病(IBD)患者有预防和 超越同龄人的急性护理需求，IBD提供了一个极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)在很大程度上具有尚未实现的潜力 促进提供者和家庭团队之间的协调。该项目利用了基于网络的和移动的 手机应用程序接入点，分享IBD中心电子病历中患者的特定信息。干预， MyIBDplan是在患者、家属和提供者的系统投入下开发的。我们的目标是 评估向家庭和护理团队提供与IBD相关的健康需求的量身定制指导的可行性 成员使用低成本、低风险的健康通信创新来增强现有的健康信息 技术其基本原理是，IBD专家对家庭的简短、可操作的、个性化的指导 其他提供者将支持有关寻求和提供及时的预防性和急性护理的决定。 尽管干预建立在先前的工作和证据的基础上，并已进行了试点测试，但它需要可行性 在大规模评估之前，在实践中进行测试。我们将通过试点来评估MyIBD计划的可行性 同一地点随机对照试验(n=60)。本研究有三个研究目的：(1)评估 (2)评估实施MyIBD计划的可行性和接受性 儿童IBD临床；(3)探索MyIBD计划的可行性，以改善(A)从以下方面收集的护理质量措施 参与者和电子病历和(B)患者自我管理。在目标1中，我们将评估学科招募， 使用研究记录对对照受试者进行随机化、保留、干预完成和污染。为 目标2，我们将通过访谈和调查来了解IBD诊所和 从患者/家属和护理提供者的角度来看，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 自我管理，完成指南支持的儿童IBD干预质量指标 和对照组，这可能是随后随机试验的终点。该项目在以下方面具有创新性 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 共同承担责任。MyIBDplan针对有效协调的众所周知的障碍，并纳入了 个人裁剪、家庭参与、专家建模和促进精简的行为策略 提供信息，并增强其相关性、可及性和可操作性。建议的研究是 意义重大，因为它有潜力通过低成本干预来改善健康，以加强对现有 健康信息技术。这项研究的发现可以为EHR支持的质量提供一个框架 通过对一系列儿童慢性病的学习卫生系统研究来改进。

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.