Improving transitions of care for adults with congenital heart disease

项目摘要/摘要 美国约有140万成人患有先天性心脏病(ACHD)，他们的数字是 由于改善了儿科CHD护理，每年增加40,000-50,000人。高达85%的ACHD患者未能 建立或维持ACHD专家护理，这会导致较差的结果，这是这些患者最脆弱的时期 在从儿科医疗向成人医疗过渡和转移时存在差距。转型包括培养 患者对其冠心病以及终身所需的自我管理和自我效能技能的了解 慢性病的管理。移交是指病人的护理由成人医疗机构接管的事件 一队。由于慢性冠心病的管理干扰了日常生活活动(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护理工作。知识、自我管理、自我管理 有效性和患者激活度是患者参与的重要技能，以及加强这些的策略 众所周知，技能可以减少ACHD护理方面的差距。 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 使用基于移动应用的干预作为一种相对便宜且可扩展的解决方案来支持ACHD患者 参与技巧。但是，为了它的成功，将行为改变理论融入到它的设计中是至关重要的。因此， 我的中心假设是，一种基于移动应用程序的自动化、交互式干预手段， 机会、动机-行为理论评估行为的决定因素可以提高已知的技能 支持ACHD患者参与和ACHD专家会诊。为了验证这一假设，《目标1》将阐明 移动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将使用迭代过程，输入来自 由ACHD患者、临床医生和研究人员组成的咨询委员会，以设计和修订自动交互 用户友好的应用程序。目标3将进行一项试点研究，以确定移动应用程序的可行性和可接受性 增强ACHD患者的参与技能。这些目标将为未来的研究创造基础知识 确定基于移动健康的干预措施的有效性，以支持ACHD患者的参与并确保 ACHD专家来访。候选人是加州大学旧金山分校的ACHD心脏病专家和卫生服务研究员。这个 候选人、她的导师和她的科学顾问制定了一项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。使用 强大的机构承诺，候选人处于有利地位，以实现研究的独立性。

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.