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Int J Cardiol. 2014 Feb 15;171(3):351-60. doi: 10.1016/j.ijcard.2013.12.034. Epub 2013 Dec 24.

Clinical research priorities in adult congenital heart disease.

Author information

  • 1Department of Internal Medicine, University of Michigan Medical School, Ann Arbor, MI, United States; Department of Pediatrics, University of Michigan Medical School, Ann Arbor, MI, United States. Electronic address: cottstim@umich.edu.
  • 2Montreal Heart Institute, Université de Montréal, Montreal, Canada.
  • 3Boston Children's Hospital, Department of Cardiology, Brigham and Women's Hospital, Harvard Medical School, Boston, MA, United States; Department of Medicine, Brigham and Women's Hospital, Harvard Medical School, Boston, MA, United States.
  • 4Division of Cardiology, Children's National Medical Center, Washington, D.C., United States.
  • 5Columbus Ohio Adult Congenital Heart Disease Program, The Heart Center, Nationwide Children's Hospital, The Ohio State University, Columbus, OH, United States; Department of Pediatrics, The Ohio State University, Columbus, OH, United States; Department of Internal Medicine, The Ohio State University, Columbus, OH, United States.
  • 6Department of Pediatrics, Heart Institute, Children's Hospital of Pittsburgh of UPMC, Pittsburgh, PA, United States.
  • 7Department of Internal Medicine, University of California, Los Angeles, CA, United States.
  • 8Heart & Vascular Institute, Hershey Medical Center, Pennsylvania State University, Hershey, PA, United States.
  • 9Adult Congenital Heart Association, Philadelphia, PA, United States.
  • 10Department of Internal Medicine, University of Colorado, Denver, United States; Department of Pediatrics, University of Colorado, Denver, United States.
  • 11Department of Internal Medicine, Medical College of Wisconsin, Milwaukee, WI, United States; Department of Pediatrics, Medical College of Wisconsin, Milwaukee, WI, United States.
  • 12Department of Medicine, Baylor College of Medicine, Texas Children's Hospital, Houston, TX, United States; Department of Pediatrics, Baylor College of Medicine, Texas Children's Hospital, Houston, TX, United States.
  • 13Division of Cardiothoracic Surgery, Emory University, Atlanta, GA, United States.
  • 14Knight Cardiovascular Institute, Oregon Health & Science University, Portland, OR, United States.

Abstract

BACKGROUND:

Adult congenital heart disease (ACHD) clinicians are hampered by the paucity of data to inform clinical decision-making. The objective of this study was to identify priorities for clinical research in ACHD.

METHODS:

A list of 45 research questions was developed by the Alliance for Adult Research in Congenital Cardiology (AARCC), compiled into a survey, and administered to ACHD providers. Patient input was sought via the Adult Congenital Heart Association at community meetings and online forums. The 25 top questions were sent to ACHD providers worldwide via an online survey. Each question was ranked based on perceived priority and weighted based on time spent in ACHD care. The top 10 topics identified are presented and discussed.

RESULTS:

The final online survey yielded 139 responses. Top priority questions related to tetralogy of Fallot (timing of pulmonary valve replacement and criteria for primary prevention ICDs), patients with systemic right ventricles (determining the optimal echocardiographic techniques for measuring right ventricular function, and indications for tricuspid valve replacement and primary prevention ICDs), and single ventricle/Fontan patients (role of pulmonary vasodilators, optimal anticoagulation, medical therapy for preservation of ventricular function, treatment for protein losing enteropathy). In addition, establishing criteria to refer ACHD patients for cardiac transplantation was deemed a priority.

CONCLUSIONS:

The ACHD field is in need of prospective research to address fundamental clinical questions. It is hoped that this methodical consultation process will inform researchers and funding organizations about clinical research topics deemed to be of high priority.

Copyright © 2013 Elsevier Ireland Ltd. All rights reserved.

KEYWORDS:

Congenital heart disease; Fontan procedure; Survey; Tetralogy of Fallot; Transposition of the great arteries

PMID:
24411207
[PubMed - in process]
PMCID:
PMC3940155
[Available on 2015/2/15]
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