Improving transitions of care for adults with congenital heart disease

改善先天性心脏病成人护理的过渡

基本信息

批准号：
10700083
负责人：
Anushree Agarwal
金额：
$ 18.9万
依托单位：
UNIVERSITY OF CALIFORNIA, SAN FRANCISCO
依托单位国家：
美国
项目类别：
财政年份：
2022
资助国家：
美国
起止时间：
2022-09-08 至 2027-08-31
项目状态：
未结题

来源：
https://reporter.nih.gov/project-details/10700083
关键词：
Address Adopted Adult Behavior Behavior Therapy Behavioral Behavioral Model Boston Caring Cellular Phone Childhood Chronic Chronic Disease Clinic Clinical Clinical Trials Conduct Clinical Trials Data Dedications Development Development Plans Education Ensure Event Failure Family Planning Feedback Fostering Funding Future Goals Health Health Services Health system Healthcare Healthcare Systems Infrastructure Institution Intervention Interview Knowledge Knowledge Management Life Measures Medical Medical Care Team Mentors Mentorship Motivation Nurses Occupations Outcome Patient Care Patients Pediatric cardiology Pilot Projects Population Positioning Attribute Process Provider Qualitative Methods Research Research Personnel Resources Risk San Francisco Self Efficacy Self Management Specialist Structure Surveys Technology Testing Time Training Travel United States National Institutes of Health Visit Vocation Washington acceptability and feasibility behavior change care costs care outcomes career development congenital heart disorder design effectiveness evaluation experience high risk improved intervention refinement mHealth mobile application mortality multidisciplinary patient engagement programs prospective psychosocial randomized, controlled study skill acquisition skills success theories therapy design user-friendly willingness

项目摘要

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.

项目概要/摘要美国约有 140 万成年人患有先天性心脏病 (ACHD)，其人数为由于儿科 CHD 护理的改善，每年增加 40,000-50,000 名 ACHD 患者。建立或维持 ACHD 专科护理会导致不良结果，这是这些人最脆弱的时期从儿科医疗保健向成人医疗保健过渡和转移时存在差距。患者对其 CHD 的了解以及终生所需的自我管理和自我效能技能慢性疾病的管理。转移是指患者的护理由成人医疗保健机构接管的事件。由于冠心病的长期治疗会干扰日常生活活动（例如工作、计划生育、旅行），这些成年人中的许多人很难进行自我护理、自我管理、自我管理。疗效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 患者都是年轻人并拥有智能手机，这提供了一个独特的机会。使用基于移动应用程序的干预作为相对便宜且可扩展的解决方案来支持 ACHD 患者但是，为了使其成功，将行为改变理论纳入其设计至关重要。我的中心假设是，使用“能力、评估行为决定因素的机会、动机-行为理论可以增强已知的技能支持 ACHD 患者参与和 ACHD 专家访问为了检验这一假设，目标 1 将阐明这一点。移动应用程序的相关功能，通过半结构化访谈来支持患者参与技能 ACHD 患者、信徒、研究人员和诊所工作人员将使用迭代过程并听取来自各方的意见。由 ACHD 患者、羊群和研究人员组成的咨询委员会，负责设计和修改自动交互用户友好的应用程序。 Aim 3 将进行试点研究，以确定移动应用程序的可行性和可接受性。这些目标将为未来的研究奠定基础知识。确定基于移动医疗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 UCSF 的 ACHD 心脏病专家和健康服务研究员。候选人、她的导师和科学顾问制定了全面的职业发展计划其中包括基于移动健康的行为干预、定性方法和临床试验的培训。凭借强有力的机构承诺，候选人有能力获得研究独立性。