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.

National Institute of Health (NIH)
National Heart, Lung, and Blood Institute (NHLBI)
Mentored Patient-Oriented Research Career Development Award (K23)
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Special Emphasis Panel (ZHL1-CSR-R (F1))
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Scott, Jane
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Children's Hospital Boston
United States
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