Improving transitions of care for adults with congenital heart disease

项目概要/摘要 在美国有大约140万患有先天性心脏病（ACHD）的成年人， 由于儿童CHD护理的改善，每年增加40，000 - 50，000例。高达85%的ACHD患者未能 建立或维持ACHD专家护理，导致结果不佳，这是这些患者最脆弱的时期。 在从儿科向成人医疗保健过渡和转移时存在差距。过渡包括促进 患者对冠心病的了解以及终身所需的自我管理和自我效能技能 慢性病的管理。转移是指患者的护理由成人医疗机构接管的事件 团队由于CHD的慢性管理干扰日常生活活动（如工作，计划生育， 旅行），这些成年人中的许多人很难从事自己的照顾。知识、自我管理、自我管理 有效性和患者激活是患者参与的重要技能，以及增强这些技能的策略 已知的技能可以减少ACHD护理的差距。 大多数ACHD患者都是年轻人，拥有智能手机。这提供了一个独特的机会， 使用基于移动的应用程序的干预作为一种相对廉价且可扩展的解决方案，以支持ACHD患者 参与技能。但是，为了它的成功，将行为改变理论纳入其设计至关重要。因此，在本发明中， 我的中心假设是，一个自动化的，互动的，基于移动的应用程序的干预，使用“能力”， 机会，动机-行为理论来评估行为的决定因素可以提高技能， 支持ACHD患者参与和ACHD专家访问。为了验证这一假设，目标1将阐明 移动的应用程序的相关功能，以支持使用半结构化访谈的患者参与技能， ACHD患者，临床医生，研究人员和诊所工作人员。目标2将使用一个迭代过程，输入来自 一个由ACHD患者、临床医生和研究人员组成的咨询委员会，负责设计和修改一个自动化的交互式 Aim 3将进行一项试点研究，以确定移动的应用程序的可行性和可接受性， 提高ACHD患者参与技能。这些目标将为未来的研究创造基础知识， 确定基于mHealth的干预措施的有效性，以支持ACHD患者参与，并确保 ACHD专家访问。候选人是加州大学旧金山分校的ACHD心脏病专家和健康服务研究员。的 候选人，她的导师和她的科学顾问已经制定了全面的职业发展计划 这包括基于移动健康的行为干预、定性方法和临床试验方面的培训。与 强有力的机构承诺，候选人处于有利地位，以实现研究独立。

PROJECT SUMMARY/ABSTRACT There are ~1.4 million adults with congenital heart disease (ACHD) in the US and their number is increasing by 40,000-50,000/year due to improving pediatric CHD care. Up to 85% of the ACHD patients fail to establish or maintain ACHD specialist care which results in poor outcomes, the most vulnerable period for these gaps being at the time of transition and transfer from pediatric to adult healthcare. Transition includes fostering of patients’ knowledge of their CHD and of self-management and self-efficacy skills needed for lifelong management of chronic disease. Transfer is the event when a patient's care is taken over by the adult healthcare team. Since chronic management of CHD interferes with daily life activities (such as job, family planning, traveling), it is difficult for many of these adults to engage in their own care. Knowledge, self-management, self- efficacy, and patient activation are important skills for patient engagement, and strategies that enhance these skills are known to reduce gaps in ACHD care. Majority of the ACHD patients are young and own smartphones. This provides a unique opportunity to use mobile app-based intervention as a relatively inexpensive and scalable solution to support ACHD patient engagement skills. But, for its success, it is critical to incorporate theory of behavior change into its design. Thus, my central hypothesis is that an automated, interactive, mobile app-based intervention refined using ‘Capability, Opportunity, Motivation-Behavioral’ theory to evaluate the determinants of behavior can enhance skills known to support ACHD patient engagement and ACHD specialist visit. To test this hypothesis, Aim 1 will shed light on the pertinent features of a mobile app to support patient engagement skills using semi-structured interviews of the ACHD patients, clinicians, researchers, and clinic staff. Aim 2 will use an iterative process with inputs from an Advisory Board of ACHD patients, clinicians, and researchers to design and revise an automated interactive user-friendly app. Aim 3 will carry out a pilot study to determine feasibility and acceptability of the mobile app to enhance ACHD patient engagement skills. These aims will create foundational knowledge for future studies to determine effectiveness of a mHealth based intervention to support ACHD patient engagement and ensure ACHD specialist visit. Candidate is an ACHD cardiologist and health services researcher at UCSF. The candidate, her mentors and her scientific advisors have developed a comprehensive career development plan that includes training in mHealth-based behavioral interventions, qualitative methods, and clinical trials. With strong institutional commitment, the candidate is well-positioned to attain research independence.