Project Summary

What is this research about?

Congenital heart defects (CHDs) are abnormalities of the heart that are present in a person at birth. CHDs encompass many different types of rare diseases with different levels of severity and complications. It is estimated that nearly 150,000 adults are living with complex CHD in the United States, and that number is growing due to improvements in treatment. However, most adolescents and adults are not receiving appropriate levels of care, and many are not aware of the importance of continuing to be seen by a cardiologist and often return to cardiology care only after suffering serious health consequences.

This study will try to identify how current care guidelines impact the needs and outcomes of adults with different types of noncomplex and complex CHDs by using the data infrastructure of PCORnet. The goals are to better identify the needs of patients with different subtypes of CHD while also identifying factors that might contribute to inadequate levels of care.

Who can this research help?

This study is designed to provide adult congenital heart disease (ACHD) patients, as well as their families, physicians, and researchers, with, as one patient wrote, “a better understanding of who is out there and how they are doing.” Our research will begin to unpack these questions so that patients can make more informed decisions about their care, enabling doctors to better focus their services, and give both physicians and researchers a look at how consistent care—or lack thereof—impacts patient-reported outcomes for quality of life, physical health and functioning, and mental health. This project will also help pediatric patients and their families better understand their long-term outcomes and will allow physicians and researchers to improve current treatment and care guidelines to enhance the health of their patients.

What will the research team be doing?

The research team is working with 14 PCORnet sites across the country to gather data on patients aged 18 years or older with a CHD diagnosis. The research team will try to distinguish whether patients who are still receiving recommended care by a cardiologist are doing better than those who are not receiving it. The team will do this by examining the rates of complication or associated illnesses, as well as how patients have used the healthcare system. This study will also help identify which patients might be at risk of having gaps in their health care and when these gaps might occur in their life.

The investigators at each site will contact patients with an invitation to enroll in the Congenital Heart Initiative registry, which is the first patient-powered registry for adults with congenital heart disease. By enrolling in the Congenital Heart Initiative, researchers will be able to directly ask patients about how they are feeling directly as well as potential barriers to obtaining specialized health care.

This project was born out of discussions with patient partners, researchers, and the Adult Congenital Heart Association at a Patient-Powered Research Summit in March 2018. This meeting was sponsored by the Cardiovascular Health Collaborative Research Group from PCORnet. Participants developed research questions and outcomes important to CHD patients and their families. Input from these stakeholders drove the aims of this study and the associated research questions. We will build on these collaborations to complete the proposed study. The major goals of this study are (1) to better understand the impacts of gaps in recommended cardiology care, and (2) to establish a system to study different care protocols and interventions aimed at reducing gaps in care.

Research methods at a glance

  • Design: Prospective cohort design
  • Population: Adults aged 18 and older with CHD (as identified by ICD9/ICD10 codes)
  • Interventions/Comparators: This study will use PCORnet to examine the effects of gaps in recommended care (cardiology visits) on patient-prioritized outcomes for adults with noncomplex and complex subtypes of CHD.
  • Outcomes:
    • Primary: Healthcare utilization and co-morbidities
    • Secondary: Predictors of loss to follow-up and patient-reported outcomes
  • Timeframe: Three years

Project Information

Thomas Carton, PhD, MS
Anitha John
Louisiana Public Health Institute

Key Dates

March 2021
July 2025

Study Registration Information


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Last updated: January 20, 2023