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开发和评估一款综合数字工具以改善炎症性肠病患者的复杂护理和自我管理:一项混合有效性-实施研究的方案

Developing and Evaluating a Bundled Digital Tool to Improve Complex Care and Self-Management of Patients With Inflammatory Bowel Disease: Protocol for a Hybrid Effectiveness-Implementation Study.

作者信息

Chappell Kaitlyn Delaney, Fox Melissa, Armstrong Thomas Scott, Ajibulu Lekan, Seow Cynthia H, Montano-Loza Aldo, Kroeker Karen I, Kaplan Gilaad G, Novak Kerri, Ma Christopher, Ingram Richard, Hoentjen Frank, Halloran Brendan, Peerani Farhad, Kao Dina, Wong Karen

机构信息

Division of Gastroenterology, Department of Medicine, University of Alberta, 130 University Campus NW, Edmonton, AB, T6G2X8, Canada, 1 7804928691 ext 6.

Division of Gastroenterology & Hepatology, Department of Medicine, University of Calgary, Calgary, AB, Canada.

出版信息

JMIR Res Protoc. 2025 Aug 1;14:e65659. doi: 10.2196/65659.

DOI:10.2196/65659
PMID:40749176
Abstract

BACKGROUND

Individuals with inflammatory bowel disease (IBD) require comprehensive care to address the physical and psychosocial burden of their disease. The demand for IBD care often exceeds availability, resulting in delayed access and suboptimal management. As a result, patients with IBD are required to self-manage significant aspects of their disease between appointments with their medical team. Digital self-management tools may help address this gap by empowering patients to be more engaged in managing their disease, potentially improving outcomes and reducing the strain on the health care system.

OBJECTIVE

This study aimed to design, implement, and evaluate a bundled digital health tool, MyIBDToolkit, with the overarching goal of improving the quality of care and self-management for patients with IBD in Alberta, Canada.

METHODS

A bundled digital health tool, MyIBDToolkit, will be integrated into our provincial electronic health record system to ensure broad accessibility and continuity of care. We will use a type 2 hybrid effectiveness-implementation design to evaluate both the clinical impact and real-world integration of the toolkit. We will assess effectiveness through changes in key outcomes such as health care utilization (eg, emergency visits, hospitalizations), disease burden on patients (eg, quality of life, symptom control), and burden on the health care system. These outcomes will be measured using comprehensive health care administrative data. A dual-comparison approach will be used: a within-subject comparison of health care utilization and disease burden before and after implementation of the MyIBDToolkit, and a between-group comparison of outcomes among toolkit users versus nonusers. To evaluate implementation success, we will examine reach (ie, number of patients and providers using the tool), fidelity to the planned timeline, sustained use over time, and factors influencing adoption and maintenance. Our goal is to reach 10,000 patients across Alberta, Canada, within three years.

RESULTS

We received funding for this project in January 2023. In preparation for the pilot launch, we have identified key stakeholders, including patients, health care providers and, administrators, and developed strategies to assess their readiness for MyIBDToolkit. We are also collecting mixed-methods data from patients to explore potential barriers and facilitators to using MyIBDToolkit. The first phase of MyIBDToolkit was launched in October 2024.

CONCLUSIONS

MyIBDToolkit represents a scalable and patient-centered approach to the self-management of IBD care. By empowering patients to self-manage their disease between health care visits, we aim to reduce the burden of IBD on patients, providers, and the health care system. By evaluating the effectiveness and the implementation of the MyIBDToolkit, we aim to generate actionable and sustainable improvements to IBD care in Alberta.

摘要

背景

炎症性肠病(IBD)患者需要全面护理,以应对疾病带来的身体和心理社会负担。对IBD护理的需求往往超过了可及性,导致就诊延迟和管理欠佳。因此,IBD患者在与医疗团队预约就诊期间,需要自行管理疾病的诸多重要方面。数字自我管理工具或许可以通过让患者更积极地参与疾病管理来填补这一空白,从而有可能改善治疗效果并减轻医疗系统的压力。

目的

本研究旨在设计、实施并评估一款综合数字健康工具MyIBDToolkit,总体目标是提高加拿大艾伯塔省IBD患者的护理质量和自我管理能力。

方法

一款综合数字健康工具MyIBDToolkit将被整合到我们省的电子健康记录系统中,以确保广泛的可及性和护理的连续性。我们将采用2型混合有效性-实施设计来评估该工具包的临床影响和实际应用情况。我们将通过关键指标的变化来评估有效性,如医疗保健利用率(如急诊就诊、住院)、患者的疾病负担(如生活质量、症状控制)以及医疗系统的负担。这些指标将通过综合医疗保健管理数据进行测量。将采用双重比较方法:在MyIBDToolkit实施前后,对患者进行医疗保健利用率和疾病负担的自身前后比较,以及对工具包使用者和非使用者之间的结果进行组间比较。为了评估实施的成功与否,我们将考察覆盖面(即使用该工具的患者和提供者数量)、对计划时间表的依从性、长期持续使用情况以及影响采用和维持的因素。我们的目标是在三年内覆盖加拿大艾伯塔省的10,000名患者。

结果

我们在2023年1月获得了该项目的资金。为准备试点启动,我们确定了关键利益相关者,包括患者、医疗保健提供者和管理人员,并制定了策略来评估他们对MyIBDToolkit的准备情况。我们还在从患者那里收集混合方法数据,以探索使用MyIBDToolkit的潜在障碍和促进因素。MyIBDToolkit的第一阶段于2024年10月启动。

结论

MyIBDToolkit代表了一种可扩展的、以患者为中心 的IBD护理自我管理方法。通过让患者在医疗就诊期间自行管理疾病,我们旨在减轻IBD对患者、提供者和医疗系统的负担。通过评估MyIBDToolkit的有效性和实施情况,我们旨在为艾伯塔省的IBD护理带来可操作且可持续的改进。

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