Discussion Forum
A place for registered ACHA members to discuss issues with other members of the ACHA community and provide and receive support.


The HEART-ACHD* study was designed to help the medical community learn more about how to prevent congenital heart patients from becoming lost to cardiac care and how to best educate patients about their condition.

We are proud to announce that the first set of study results of Heart-ACHD were published in the Journal of the American College of Cardiology! The authors conclude that their results "provide a foundation for further study and for consideration of public health strategies to decrease barriers to, as well as gaps in, cardiology care for the ACHD population." Click here for the abstract of the publication.

In addition, results of the educational intervention portion of Heart-ACHD were published in the International Journal of Cardiology! The authors conclude: "This joint clinician–patient pilot program will help inform future efforts toward patient education and participation in research with a focus on standardization of protocols for life-long longitudinal follow-up and continued multi-center collaboration in the ACHD population." Click here for the abstract of the publication.

Click here to see the abstract presented at the 2012 American College of Cardiology Scientific Sessions.

Community Meetings

    More than 150 CHD patients, family members and providers attended meetings at OHSU Adult Congenital Heart Disease Program (Portland, OR), the COACH (Columbus Ohio Adult Congenital Heart) Program (Columbus, OH), the Adolescent and Adult Congenital Heart Disease Clinic (Cincinnati, OH) and the Wisconsin Adult Congenital Heart (WAtCH) Disease Program (Milwaukee, WI) and the Boston Adult Congenital Heart (BACH) and Pulmonary Hypertension Program (Boston, MA) to receive information about transition, contraception/pregnancy, surgery, education, ACHD research and the future of ACHD programs. Look for more Research-driven Community Meetings in locations around the country in 2012!

Click here to see the abstract presented at the 2011 American Heart Association Scientific Sessions.

About the Study:
New patients were recruited at 11 Adult Congenital Heart centers across the United States. This project was funded through the National Institutes of Health’ Partners in Research Program, and is a partnership between ACHA and the Alliance for Adult Research in Congenital Cardiology (AARCC). AARCC, an initiative of the American College of Cardiology, works to promote multicenter collaborative research to improve outcomes for adults with congenital heart disease.

The two-year project surveyed ACHD patients at their first visit to an ACHD center. The questionnaire identified gaps in congenital heart care and barriers patients face to receiving that care. Already we are seeing that a significant proportion of study subjects are reporting having experienced a lapse in cardiac care, defined as 3 years or longer.

The study tested the effectiveness of ACHA educational materials like the Personal Health Passport through a follow-up questionnaire. After completion of the study, a community meeting will be held at each center with a local ACHA representative and a member of AARCC to share and discuss the study results.

Significance of the Study:
The development of appropriate clinical and research care systems for the adult survivors of congenital heart disease is still in its infancy. Most patients require long-term cardiology care and fifty percent of this population is living with heart defects for which published guidelines recommend care from specialists in adult congenital heart disease (ACHD).2,3,4 Despite these guidelines, the number of adults with congenital heart disease receiving this specialized medical care is much less than the projected estimates.1,5

Despite patient, professional and federal initiatives to improve ACHD care, difficulties in providing care to this community persist. Studies have reported that many patients are lost to cardiac follow-up and some can have gaps in care of 10 years or more.8-12 In the ACHD population, a lapse in medical care may result in adverse outcomes.6-8,13 Single center studies have shown those with a lapse in care are more likely to require urgent cardiac interventions or have untreated cardiac-related medical conditions.6,7 Based on small studies of patients with heart disease and other chronic pediatric-onset diseases, potential barriers to accessing specialized care include lack of patient education about their condition and the need for regular follow-up, health insurance, negative experiences in adult-oriented care, and lack of available qualified specialty centers.12,14-16

This study will provide new information on lapses in care and barriers to receiving cardiac care for our ACHD patients. It is hoped that, based on these results, new processes will be developed to address these issues and keep patients in appropriate care settings; thus improving long-term health and outcomes. The study also promotes continued collaboration between academic centers and ACHA which will hopefully foster further research participation by ACHA and by patients in the community.

AARCC-member ACHD centers participating in the study include centers at:
University of Washington Medical Center
Children’s Hospital Boston
Hospital of the University of Pennsylvania
University of Colorado Medical Center
Oregon Health and Medical Center
Columbia University Medical Center
Medical College of Wisconsin
Children’s National Medical Center
Penn State University Medical Center
Nationwide Children’s Hospital
University of California Los Angeles Medical Center

*The project described was supported by Award Number R03HL096135 from the National Heart, Lung, and Blood Institute. The content is solely the responsibility of the authors and does not necessarily represent the official views of the National Heart, Lung, And Blood Institute or the National Institutes of Health.

References available upon request.