Development of a Quality Assessment Tool for Adult Congenital Heart Disease

描述（由申请人提供）：先天性心脏病（CHD）是一种常见疾病，影响0.8%的活产婴儿。借助新的医疗和外科技术，这些儿童中有85%以上活到了成年。成年患者从他们的儿科专家过渡到成人提供者往往遭受分散和不一致的护理，这可能导致整体护理质量差。我的主要学术兴趣是通过评估所接受的护理质量和评估提供适当的、高质量的护理对患者和医疗保健系统结果的影响，来改善对这些成年冠心病患者的护理。这个职业发展奖的教育和研究计划是为了支持我自己过渡到一个独立的临床和卫生服务研究者，研究护理质量和结果。教育计划包括课程、指导学习、护理质量评估和结果研究方法、高级统计设计和分析、卫生保健经济学和卫生政策方面的体验式学习。华盛顿大学儿童医院和地区医疗中心的教育、研究和临床资源，数百万美元的研究资金，数百名经验丰富的研究人员，以及大型、活跃的心脏病学部门，提供了一个环境，将极大地帮助我实现我的目标。在此奖励期间，我将开发，可行性测试和验证一个综合质量评估工具，用于选定的成人冠心病条件（QAT-ACHD）。该工具将由使用RAND QA工具方法开发的质量指标组成。将在两家成人冠心病诊所进行可行性测试。还将通过比较QAT-ACHD的质量评分与结果（包括与健康相关的生活质量、住院率和2家成人冠心病诊所患者的急诊就诊率）进行验证。从长远来看，我计划通过进一步的拨款申请来扩展这类研究，以研究其他冠心病病症和不同的护理环境。这种类型的质量评估应该有助于未来的研究，在医疗系统中需要什么样的服务来为冠心病患者提供高质量的护理。

DESCRIPTION (provided by applicant): Congenital heart disease (CHD) is a common condition affecting 0.8% of live births. With new medical and surgical techniques, over 85% of these children survive to adulthood. Adult patients transitioning to adult providers from their pediatric specialists often suffer fragmented and inconsistent care, which may result in overall poor quality of care. My principal academic interests are improving the care for these adults with CHD, by assessing the quality of care received and evaluating the effect of providing appropriate, high quality care on patient and healthcare system outcomes. The education and research plans in this career development award are designed to support my own transition to an independent clinical and health services investigator studying quality of care and outcomes. The educational plan includes classes, directed learning, and experiential learning in quality of care assessment and outcomes research methods, advanced statistical design and analysis, and healthcare economics and health policy. The educational, research and clinical resources at the University of Washington and Children's Hospital and Regional Medical Center, with millions of dollars in research funding, hundreds of experienced researchers, and large, active cardiology divisions, provide an environment that will greatly assist me in realizing my goals. During this award period, I will develop, feasibility test and validate a comprehensive quality assessment tool for selected adult CHD conditions (QAT-ACHD). The tool will be comprised of quality indicators developed using the RAND QA Tools method. It will be feasibility tested at two adult CHD clinics. It will also be validated by comparing quality scores from the QAT-ACHD with outcomes, including health-related quality of life, hospitalizations and emergency department visits among the patients at 2 adult CHD clinics. In the long term, I plan to expand this type of research with further grant applications to study additional CHD conditions and different care environments. This type of quality assessment should facilitate future research on what services are needed in the healthcare system to provide high quality care to patients with CHD. Relevance: Adults born with heart conditions comprise about 1 million people in the United States and likely outnumber children with these conditions. The conditions vary in severity and treatment and care is often inconsistent when leaving childhood doctors which may result in poor outcomes. Quality assessment measures can help study and standardize high quality care, providing better outcomes for this large patient group.