American College of Cardiology

PROCEEDINGS OF THE 32ND BETHESDA CONFERENCE
CARE OF THE ADULT WITH CONGENITAL HEART DISEASE
JACC Vol. 37, 2001: 1161-98

32nd Bethesda Conference:
Care of the Adult With Congenital Heart Disease

Participants

HUGH D. ALLEN, MD, FACC Chief, Pediatric Cardiology Physician-in-Chief Columbus Children's Hospital 700 Children's Drive Room ED622 Columbus, OH 43205-2696 JOSEPH S. ALPERT, MD, FACC Professor of Medicine Head of Department of Medicine University of Arizona Health Sciences Center 1501 N. Campbell Avenue Tucson, AZ 85724-5035 JACQUES I. BENISTY, MD, FACC Boston Adult Congenital Heart Service Department of Cardiology Children's Hospital 300 Longwood Avenue Boston, MA 02115-5737 YVONNE BERNARD, RN Case Manager Division of Pediatric Cardiology Vanderbilt University Medical Center D2220 Medical Center North Nashville, TN 37232-2572 ALAN C. BRAVERMAN, MD, FACC Associate Professor of Medicine One Barnes-Jewish Hospital Plaza Suite 16419 East Pavilion Louis, MO 63110 National Marfan Foundation ELYSE FOSTER, MD, FACC Associate Professor of Clinical Medicine University of California, San Francisco Box 0214, Rm. 314A Moffitt Hospital 505 Parnassus Avenue, M314A San Francisco, CA 94143-0214 JAMES M. FOX, MS, MD Cardiology Fellow Division of Cardiology University of Iowa Hospital 200 Hawkins Drive Room E318-5 Iowa City, IA 52242 MICHAEL D. FREED, MD, FACC Senior Associate Department of Cardiology Children's Hospital 300 Longwood Avenue Boston, MA 02115-5737 VALENTIN FUSTER, MD, PShD, FACC Director Zena & Michael A. Wiener Cardiovascular Institute Mount Sinai Medical Center One Gustave Levy Place Box 1030 New York, NY 10029-6500 ARTHUR GARSON, Jr., MD, MPH, MACC Senior Vice President Dean for Academic Operations Texas Children’s Hospital Baylor College of Medicine 6621 Fannin Street MC1-4460 Houston, TX 77030 THOMAS P. GRAHAM, Jr., MD, FACC Director, Pediatric Cardiology Vanderbilt Medical Center 1161 21st Avenue, South (D2220 MCN) Nashville, TN 37232-0001 LOUISE HARRIS, MD, ChB, FACC Associate Professor of Medicine & Consultant Electrophysiologist University of Toronto Congenital Cardiac Centre for Adults Toronto General Hospital 150 Gerrard Street West Gerrard Wing 3-562 Toronto, Ontario M5G 2C4 CANADA JULIEN I. E. HOFFMAN, MD, FACC Professor of Pediatrics (Emeritus) Room M 1331, Box 0544 University of California 505 Parnassus Avenue San Francisco, CA 94143-0001 SUZANNE R. PATTEE, JD Vice President of Public Policy & Patient Affairs Cystic Fibrosis Foundation 6931 Arlington Road, #200 Bethesda, MD 20814 Cystic Fibrosis Foundation GAIL D. PEARSON, MD, ScD, FACC Leader, Heart Development, Function & Failure Scientific Research Group Heart Research Program National Heart, Lung & Blood Institute National Institutes of Health 6701 Rockledge Drive Room 9200, MSC 7940 Bethesda, MD 20892-7940 National Heart, Lung & Blood Institute JOSEPH K. PERLOFF, MD, FACC Director, Ahmanson/UCLA Adult Congenital Heart Disease Center Professor of Medicine and Pediatrics University of California at Los Angeles Division of Cardiology Room 47-123 CHS 10833 LeConte Avenue Los Angeles, CA 90095-1679 REED E. PYERITZ, MD, PhD Chair, Department of Human Genetics Professor of Human Genetics, Medicine & Pediatrics MCP Hahnemann School of Medicine 320 E North Avenue Pittsburgh, PA 15212-4772 GRAHAM J. REID, PhD, C Psych Assistant Professor, Psychology and Family Medicine University of Western Ontario Asst. Professor, Public Health Sciences & Medicine University of Toronto SSC 7310 London, Ontario N6A 5C2 CANADA JOHN G. REISS, PhD Director, Policy and Program Affairs Associate Professor of Pediatrics University of Florida 5700 SW 34th Street, Suite 323 Gainesville, FL 32608 Institute for Child Health Policy SARA ROSENBAUM, JD Hirsh Professor, Health Law & Policy George Washington University Medical Center School of Public Health and Health Services 2021 K Street, NW Suite 800 Washington, DC 20006

JOSEPH R. CARVER, MD, FACC Senior Medical Director Aetna U.S. Healthcare 980 Jolly Road Mail Stop U21A Blue Bell, PA 19422 MELVIN D. CHEITLIN, MD, MACC Emeritus Professor of Medicine University of California at San Francisco San Francisco General Hospital, Room 5G1 1001 Potrero Avenue San Francisco, CA 94110 JOHN S. CHILD, MD, FACC Professor of Medicine UCLA School of Medicine Division of Cardiology Department of Medicine Los Angeles, CA 90024 RUTH L. COLLINS-NAKAI, MD, FACC President, Canadian Cardiovascular Society15239 43rd Avenue Edmonton, Alberta T6G 5R3 CANADA GORDON K. DANIELSON, MD, FACC Roberts Professor of Surgery Mayo Medical Center 200 First Street, SW Rochester, MN 55905-0001 WILLIAM R. DAVIDSON, Jr., MD, FACC Director, Program for Adults with CHD Director, Echocardiography Cardiology H047 S. Hershey Medical Center 500 University Drive Hershey, PA 17033 CHARLES E. IRWIN, Jr., MD Professor of Pediatrics Vice Chair, Department of Pediatrics Director, Division of Adolescent Medicine University of California, San Francisco 3333 California Street, Suite 245 Box 0503, LH 245 San Francisco, CA 94143-0503 JOHN A. JARCHO, MD, FACC Medical Co-Director, Cardiac Transplant Program Brigham & WomenÕs Hospital Cardiovascular Division 75 Francis Street Boston, MA 02115 SAMUEL KAPLAN, MD, FACC Professor of Pediatrics University of California at Los Angeles Heart Center, Suite 330 200 UCLA Medical Plaza Los Angeles, CA 90095-6946 RAE-ELLEN W. KAVEY, MD, FACC SUNY Health Science Center at Syracuse Division of Pediatric Cardiology 725 Irving Avenue, Room 804 Syracuse, NY 13210 American Heart Association HARLAN M. KRUMHOLZ, MD, FACC Associate Professor of Medicine & Epidemiology and Public Health Yale University School of Medicine 333 Cedar Street Room IE-61 SHM New Haven, CT 06520 MICHAEL J. LANDZBERG, MD, FACC Director, Boston Adult Congenital Heart Group Department of Cardiology ChildrenÕs Hospital & Brigham & WomenÕs Hospital 300 Longwood Avenue Boston, MA 02115-5737 JAMES LANGILL 66 Waverly Road Woburn, MA 01801 RICHARD R. LIBERTHSON, MD 8 Hawthorne Place Suite 110 Boston, MA 02114 ARIANE MARELLI, MD, FRCP(c), FACC Assistant Professor of Medicine McGill University McGill University Health Care Center 1650 Cedar Avenue Division of Cardiology E-500 Montreal, Quebec H3G 1A4 CANADA ISOBEL A. RUSSELL, MD, PhD Associate Professor of Anesthesia Dept. of Anesthesia & Perioperative Care University of California at San Francisco 521 Parnassus Avenue San Francisco, CA 94143-0648 DAVID J. SAHN, MD, FACC Professor and Director, Clinical Care Center for Congenital Heart Disease Pediatric Cardiology Oregon Health Sciences University 3181 SW Sam Jackson Park Road Portland, OR 97201-3098 MATHEW SERMER, MD Chief of Obstetrics Toronto General Hospital 200 Elizabeth Street Toronto, Ontario M5G 2C4 CANADA SAMUEL C. SIU, MD, SM, FACC Director of Research University of Toronto Congenital Cardiac Centre for Adults Division of Cardiology, PMCC 3-526 200 Elizabeth Street Toronto, Ontario M5G 2C4 CANADA DAVID J. SKORTON, MD, FACC Vice President for Research The University of Iowa 201 Gilmore Hall Iowa City, IA 52242-1320 LAURENCE J. SLOSS, MD Co-Director Boston Adult Congenital Heart Service Department of Cardiology Children's Hospital Department of Cardiology 300 Longwood Avenue Boston, MA 02115-5737 JANE SOMERVILLE, MD, FACC Professor Royal Brompton Hospital 81/83 Harley Street London, W1N 1DE UNITED KINGDOM DAVID M. STRASSER, MD, FACC Medicor Associates, Inc. 104 E. 2nd Street Erie, PA 16507 JON B. TINGELSTAD, MD, FACC American Board of Pediatrics 111 Silver Cedar Court Chapel Hill, NC 27514 American Board of Pediatrics

JOHN E. DEANFIELD, MD, FACC Professor of Cardiology Cardiothoracic Unit Great Ormond Street Hospital Institute of Child Health Great Ormond Street London, WC1N 3JH UNITED KINGDOM RICHARD M. DONNER, MD Staff Pediatric Cardiologist The ChildrenÕs Hospital of Philadelphia Division of Cardiology 4th and Civic Center Blvd Philadelphia, PA 19104-4399 ANNIE DORE, MD, FRCP Assistant Professor of Medicine Montreal Heart Institute 5000 Belanger Est Montreal, Quebec H1T 1C8 CANADA DAVID J. DRISCOLL, MD, FACC Professor of Pediatrics Head, Section of Pediatric Cardiology Mayo Clinic 200 First Street, S.W. Rochester, MN 55905-0001 JOSEPH P. DROZDA, Jr., MD, FACC Principal, Carevergence Associate Director, Unity Health Research 36 Picardy Hill Drive Chesterfield, MO 63017-7127 SUSAN M. FERNANDES, MHP, PA-C Boston Adult Congenital Heart Service Department of Cardiology Children’s Hospital 300 Longwood Avenue Boston, MA 02115-5737 JOHN E. MAYER, Jr., MD, FACC Professor of Surgery Harvard Medical School Associate in Cardiac Surgery Children’s Hospital Cardiovascular Surgery 300 Longwood Avenue Boston, MA 02115-5737 FRANK X. McGOWAN, Jr., MD Associate Professor of Anesthesiology (Pediatrics) Co-Director, Cardiac Anesthesia Services Cardiac Anesthesia Service Children’s Hospital 300 Longwood Avenue Boston, MA 02115-5737 PETER McLAUGHLIN, MD, FACC Professor of Medicine University of Toronto Congenital Cardiac Centre for Adults University Health Network Toronto General Hospital 200 Elizabeth Street Eaton North, 12-224 Toronto, Ontario M5G 2C4 CANADA ROGER B. B. MEE, MD, ChB Chairman, Pediatric and Congenital Heart Surgery The Cleveland Clinic Foundation 9500 Euclid Avenue, M-41 Cleveland, OH 44195-0001 PAMELA D. MINER, RN, MN, NP Nurse Practitioner Ahmanson/UCLA Adult Congenital Heart Disease Center 10833 LeConte Avenue Room 47-123 CHS Los Angeles, CA 90095 DOUGLAS S. MOODIE, MD, FACC Chairman, Division of Pediatrics The Cleveland Clinic Foundation 9500 Euclid Ave., A120 Cleveland, OH 44195-0001 JOHN W. MOORE, MD, MPH, FACC The Heart Center for Children Christopher’s Hospital for Children Erie Avenue at Front Street Philadelphia, PA 19134 American Academy of Pediatrics DANIEL J. MURPHY, Jr., MD, FACC The Cleveland Clinic Foundation 9500 Euclid Avenue, M-41 Cleveland, OH 44195-0001 International Society for Adult Congenital Cardiac Disease SUSIE C. TRUESDELL, PA, MBA Xerox Corporation 80 Linden Oaks Parkway Mail Stop 0804-02A Rochester, NY 14625 KAREN UZARK, PhD, PNP Director of Cardiology Process and Improvement and Clinical Outcomes Children’s Hospital Medical Center Cardiology Department 3333 Burnet Avenue, OSB-4 Cincinnati, OH 45229-3039 GEORGE F. VAN HARE, MD, FACC Associate Professor of Pediatrics Stanford University 750 Welch Road, Suite 305 Palo Alto, CA 94304 ROBERT A. VOGEL, MD, FACC Herbert Berger Professor of Medicine Head, Division of Cardiology University of Maryland Hospital 22 S. Greene Street, Rm. S3B06 Baltimore, MD 21201-1544 CAROLE A. WARNES, MD, FACC Professor of Medicine Mayo Clinic Cardiovascular Diseases Rochester, MN 55905 GARY D. WEBB, MD, FACC Director University of Toronto Congenital Cardiac Centre for Adults Toronto General Hospital 200 Elizabeth Street 12EN 215 Toronto, Ontario M5G 2C4 CANADA President-Canadian Adult Congenital Heart Network Conference Co-Chair ROBERTA G. WILLIAMS, MD, FACC Chairman, Department of Pediatrics KECK School of Medicine University of Southern California Vice President for Pediatrics and Academic Affairs Childrens Hospital Los Angeles 4650 Sunset Blvd., MS 71 Los Angeles, CA 90027 Conference Co-Chair

Conference Steering Committee

GARY D. WEBB, MD, FACC, Conference Co-Chair
ROBERTA G. WILLIAMS, MD, FACC, Conference Co-Chair
JOSEPH S. ALPERT, MD, FACC
JOHN S. CHILD, MD, FACC
RUTH L. COLLINS-NAKAI, MD, FACC
ELYSE FOSTER, MD, FACC
ARTHUR GARSON, Jr., MD, MPH, MACC
THOMAS P. GRAHAM, Jr., MD, FACC
MICHAEL J. LANDZBERG, MD, FACC
RICHARD LIBERTHSON, MD
DANIEL J. MURPHY, Jr., MD, FACC
DAVID J. SKORTON, MD, FACC
CAROLE A. WARNES, MD, FACC

Staff

American College of Cardiology

CHRISTINE W. McENTEE, Executive Vice President
MARIE E. MICHNICH, DrPH., Senior Associate Executive Vice President
CHARLENE L. MAY, Director, Document Development and Practice Guidelines
LISA B. BRADFIELD, Manager, Document Development

© 2001 by The American College of Cardiology
Published by Elsevier Science Inc.