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Author Notes:

Correspondence to: Matthew Oster, MD, MPH, Children's Healthcare of Atlanta, Division of Pediatric Cardiology, 1405 Clifton Road NE, Atlanta, GA 30322. E‐mail: ostrm@kidsheart.com

See publication for full list of acknowledgements.

Disclosures: none.

The final document was reviewed and endorsed by the Congenital Heart Public Health Consortium (CHPHC; www.chphc.org). However, this document does not necessarily represent the official position of the numerous individual organizations that participate in CHPHC.

The findings and conclusions in this report are those of the authors and do not necessarily represent the official position of the Centers for Disease Control and Prevention or the National Heart, Lung, and Blood Institute.

This document does not necessarily reflect the views of the editors or of the American Heart Association.

Subjects:

Research Funding:

This work was supported in part by an appointment to the Research Participation Program at the Centers for Disease Control and Prevention administered by the Oak Ridge Institute for Science and Education through an interagency agreement between the US Department of Energy and the Centers for Disease Control and Prevention.

Keywords:

  • Science & Technology
  • Life Sciences & Biomedicine
  • Cardiac & Cardiovascular Systems
  • Cardiovascular System & Cardiology
  • PEDIATRIC CARDIAC-DISEASE
  • 2ND NATURAL-HISTORY
  • BALTIMORE-WASHINGTON INFANT
  • UNITED-STATES
  • SCIENTIFIC STATEMENT
  • BIRTH-DEFECTS
  • TASK-FORCE
  • CARDIOVASCULAR-DISEASE
  • CURRENT KNOWLEDGE
  • VALVAR STENOSIS
  • Heart defects
  • Congenital heart defect
  • Epidemiology
  • Population
  • Prevention
  • Risk factors

Public Health Science Agenda for Congenital Heart Defects: Report From a Centers for Disease Control and Prevention Experts Meeting

Tools:

Journal Title:

Journal of the American Heart Association

Volume:

Volume 2, Number 5

Publisher:

, Pages e000256-e000256

Type of Work:

Article | Final Publisher PDF

Abstract:

Congenital heart defects (CHDs) are the most common type of birth defect, affecting ≈1% of births per year.1 Although survival has been improving over time, there remain numerous gaps in the understanding of the public health impact of CHDs across the lifespan. Recognizing that there was “a lack of rigorous epidemiological and longitudinal data on individuals of all ages with congenital heart disease,” the US Congress provided funding through the Appropriations Act of 2012 to the US Centers for Disease Control and Prevention (CDC) to investigate the gaps in understanding of the public health impact of CHDs.2 Given the broad array of possible topics to address with limited resources, the CDC invited experts to a meeting on September 10–11, 2012, to seek individual input on the major gaps in the understanding of CHDs and to suggest public health strategies to address those gaps. Fifty experts attended the meeting representing diverse specialties and perspectives including medical content (CHDs), methods (public health strategies), and personal experience. The group included persons and stakeholders from varied disciplines (physicians, surgeons, epidemiologists, public health officials, advocates, and patients) with a broad representation of public health, professional, and CHD advocacy organizations (the full list of experts is included in the section). Prior to the meeting, participants received background information to lay the foundation for the meeting. Participants were asked to attend 1 of 2 live webinars hosted by the CDC to outline the public health framework for congenital heart defects. Participants also received articles covering key topics in public health and congenital heart defects for review on their own prior to the meeting.3–6 Finally, at the initiation of the meeting, background presentations were delivered on the current state of knowledge for each of the 4 key areas: epidemiology, health services, long-term morbidity/mortality, and long-term psychosocial and neurodevelopmental outcomes. For the major activity of the conference, invitees participated in 1 of 4 focus groups centered on 1 of those key areas. Each group was charged with 3 tasks: (1) identifying the key gaps in public health for CHDs, (2) brainstorming potential strategies to address those gaps, and (3) suggesting a prioritization of the identified gaps and strategies based on their potential impact and feasibility. The results of each group, with notable overlaps, were discussed by the full panel of participants to help guide an overall list of suggested major focus areas. After a large group discussion of the 32 gaps identified, the gaps identified as prioritized, in no particular order, included prevalence of CHDs across the lifespan, risk factors for development of CHDs, long-term outcomes for persons with CHDs, health services delivery for persons with CHDs, and public awareness of the burden and impact of CHDs. As outlined in Table 1, we have synthesized the prioritized gaps and their accompanying strategies into a public health science agenda for CHDs.

Copyright information:

© 2013 The Authors. Published on behalf of the American Heart Association, Inc., by Wiley Blackwell.

This is an Open Access work distributed under the terms of the Creative Commons Attribution-Noncommercial 3.0 Unported License (http://creativecommons.org/licenses/by-nc/3.0/).

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