Development of a Quality Assessment Tool for Adult Congenital Heart Disease

描述(申请人提供)：先天性心脏病(CHD)是一种常见的疾病，影响0.8%的活产儿。有了新的医疗和外科技术，这些儿童中超过85%的人可以活到成年。从儿科专家过渡到成人提供者的成年患者往往遭受零散和不一致的护理，这可能导致总体护理质量较差。我的主要学术兴趣是通过评估接受的护理质量和评估提供适当、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患有CHD的成年人的护理。这个职业发展奖中的教育和研究计划旨在支持我自己过渡到一名研究护理质量和结果的独立临床和卫生服务调查员。教育计划包括护理质量评估和结果研究方法、高级统计设计和分析以及医疗保健经济和卫生政策方面的课堂、定向学习和体验式学习。华盛顿大学儿童医院和地区医学中心的教育、研究和临床资源，拥有数百万美元的研究资金，数百名经验丰富的研究人员，以及庞大的活跃的心脏病学部门，为我提供了一个极大地帮助我实现目标的环境。在此获奖期间，我将开发、可行性测试和验证针对选定成人冠心病疾病的综合质量评估工具(QAT-ACHD)。该工具将由使用兰德质量保证工具方法制定的质量指标组成。它将在两家成人冠心病诊所进行可行性测试。它还将通过将QAT-ACHD的质量分数与结果进行比较来验证，结果包括与健康相关的生活质量、住院和在2个成年冠心病诊所的患者的急诊科就诊。从长远来看，我计划通过进一步的拨款申请来扩大这类研究，以研究更多的CHD状况和不同的护理环境。这种类型的质量评估应有助于未来研究医疗系统需要哪些服务来为冠心病患者提供高质量的护理。 相关性：在美国，出生时患有心脏疾病的成年人约有100万，而且人数可能超过患有这些疾病的儿童。病情的严重程度各不相同，在离开儿科医生时，治疗和护理往往不一致，这可能会导致糟糕的结果。质量评估措施可以帮助研究和标准化高质量的护理，为这一庞大的患者群体提供更好的结果。

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.