Hostname: page-component-7dd5485656-k8lnt Total loading time: 0 Render date: 2025-10-29T05:51:53.544Z Has data issue: false hasContentIssue false
  • English
  • Français

The Fontan outcomes network: first steps towards building a lifespan registry for individuals with Fontan circulation in the United States

Published online by Cambridge University Press:  08 July 2020

Tarek Alsaied Open the ORCID record for Tarek Alsaied [Opens in a new window] ,
Kiona Y. Allen ,
Jeffrey B. Anderson ,
Julia S. Anixt ,
David W. Brown ,
Frank Cetta ,
Rachael Cordina ,
Yves D’udekem ,
Meghan Didier  and
Salil Ginde
...Show all authors
Tarek Alsaied*
Affiliation:
Heart Institute, Department of Pediatrics, Cincinnati Children’s Hospital Medical Center, University of Cincinnati, Cincinnati, OH, USA
Kiona Y. Allen
Affiliation:
Division of Cardiology, Ann & Robert H. Lurie Children’s Hospital of Chicago, Chicago, IL, USA Department of Pediatrics, Feinberg Northwestern University School of Medicine, Chicago, IL, USA
Jeffrey B. Anderson
Affiliation:
Heart Institute, Department of Pediatrics, Cincinnati Children’s Hospital Medical Center, University of Cincinnati, Cincinnati, OH, USA
Julia S. Anixt
Affiliation:
Division of Developmental and Behavioral Pediatrics, Cincinnati Children’s Hospital Medical Center, Cincinnati, OH, USA Department of Pediatrics, University of Cincinnati, Cincinnati, OH, USA
David W. Brown
Affiliation:
Department of Cardiology, Boston Children’s Hospital, Boston, MA, USA Department of Pediatrics, Harvard Medical School, Boston, MA, USA
Frank Cetta
Affiliation:
Department of Pediatric Cardiology, The Mayo Clinic, Rochester, MN, USA
Rachael Cordina
Affiliation:
Royal Prince Alfred Hospital, Sydney, Australia
Yves D’udekem
Affiliation:
Children’s National Cardiac Surgery and Heart Institute, Washington, DC, USA
Meghan Didier
Affiliation:
Sisters by Heart Organization, El Segundo, CA, USA The National Pediatric Cardiology Quality Improvent Collaborative, Cincinnati, OH, USA
Salil Ginde
Affiliation:
Department of Cardiology, The Children’s Hospital of Wisconsin, Milwaukee, WI, USA
Michael V. Di Maria
Affiliation:
Heart Institute, Children’s Hospital Colorado, Department of Pediatrics, University of Colorado School of Medicine, Aurora, CO, USA
Michelle Eversole
Affiliation:
The Anderson Center for Health Systems Excellence, Cincinnati Children’s Hospital Medical Center, Cincinnati, OH, USA
David Goldberg
Affiliation:
Department of Pediatric Cardiology, The Children’s Hospital of Philadelphia, Philadelphia, PA, USA
Bryan H. Goldstein
Affiliation:
Heart Institute, UPMC Children’s Hospital of Pittsburgh, Department of Pediatrics, University of Pittsburgh School of Medicine, Pittsburgh, PA, USA
Erin Hoffmann
Affiliation:
Additional Ventures, Palo Alto, CA, USA
Adrienne H. Kovacs
Affiliation:
Knight Cardiovascular Institute, Oregon Health & Science University, Portland, OR, USA
Carole Lannon
Affiliation:
The Anderson Center for Health Systems Excellence, Cincinnati Children’s Hospital Medical Center, Cincinnati, OH, USA American Board of Pediatrics, Chapel Hill, NC, USA
Stacey Lihn
Affiliation:
Sisters by Heart Organization, El Segundo, CA, USA The National Pediatric Cardiology Quality Improvent Collaborative, Cincinnati, OH, USA
Adam M. Lubert
Affiliation:
Heart Institute, Department of Pediatrics, Cincinnati Children’s Hospital Medical Center, University of Cincinnati, Cincinnati, OH, USA
Bradley S. Marino
Affiliation:
Division of Cardiology, Ann & Robert H. Lurie Children’s Hospital of Chicago, Chicago, IL, USA Department of Pediatrics, Feinberg Northwestern University School of Medicine, Chicago, IL, USA
Emily Mullen
Affiliation:
The Anderson Center for Health Systems Excellence, Cincinnati Children’s Hospital Medical Center, Cincinnati, OH, USA American Board of Pediatrics, Chapel Hill, NC, USA Data Management and Analysis Center, Division of Biostatistics and Epidemiology, Cincinnati Children’s Hospital Medical Center, Cincinnati, OH, USA
Diane Pickles
Affiliation:
One Brave Idea at American Heart Association, Boston, MA, USA
Rahul H. Rathod
Affiliation:
Department of Cardiology, Boston Children’s Hospital, Boston, MA, USA Department of Pediatrics, Harvard Medical School, Boston, MA, USA
Jack Rychik
Affiliation:
Department of Pediatric Cardiology, The Children’s Hospital of Philadelphia, Philadelphia, PA, USA
James S. Tweddell
Affiliation:
Heart Institute, Department of Pediatrics, Cincinnati Children’s Hospital Medical Center, University of Cincinnati, Cincinnati, OH, USA Department of Cardiothoracic Surgery, Cincinnati Children’s Hospital Medical Center, University of Cincinnati, Cincinnati, OH, USA
Sharyl Wooton
Affiliation:
The Anderson Center for Health Systems Excellence, Cincinnati Children’s Hospital Medical Center, Cincinnati, OH, USA American Board of Pediatrics, Chapel Hill, NC, USA
Gail Wright
Affiliation:
Department of Pediatric Cardiology, Stanford University, Palo Alto, CA, USA
Adel Younoszai
Affiliation:
Heart Institute, Children’s Hospital Colorado, Department of Pediatrics, University of Colorado School of Medicine, Aurora, CO, USA
Tom Glenn
Affiliation:
Rady Children’s Hospital, Department of Pediatric Cardiology, San Diego, California
Alicia Wilmoth
Affiliation:
Heart Institute, Department of Pediatrics, Cincinnati Children’s Hospital Medical Center, University of Cincinnati, Cincinnati, OH, USA
Kurt Schumacher
Affiliation:
Congenital Heart Center, C.S. Mott Children’s Hospital, University of Michigan, Ann Arbor, MI, USA
*
Author for correspondence: Tarek Alsaied, MD, Heart Institute, Cincinnati Children’s Hospital Medical Center, 3333 Burnet Ave, Cincinnati, OH45229, USA. Phone: +513-652-1226. Fax: +513-636-3952. Email: tarek.alsaied2@cchmc.org
Get access Rights & Permissions [Opens in a new window]

Abstract

The Fontan Outcomes Network was created to improve outcomes for children and adults with single ventricle CHD living with Fontan circulation. The network mission is to optimise longevity and quality of life by improving physical health, neurodevelopmental outcomes, resilience, and emotional health for these individuals and their families. This manuscript describes the systematic design of this new learning health network, including the initial steps in development of a national, lifespan registry, and pilot testing of data collection forms at 10 congenital heart centres.

Keywords

Fontanregistryimproving outcomessingle ventricle

Information

Type
Review Article
Information
Cardiology in the Young , Volume 30 , Issue 8 , August 2020 , pp. 1070 - 1075
Copyright
© The Author(s), 2020. Published by Cambridge University Press

Access options

Get access to the full version of this content by using one of the access options below. (Log in options will check for institutional or personal access. Content may require purchase if you do not have access.)

Article purchase

Temporarily unavailable

Footnotes

*

Authors order is alphabetical.

References

Fontan, F, Baudet, E.Surgical repair of tricuspid atresia. Thorax 1971; 26: 240–248.CrossRefGoogle ScholarPubMed
d’Udekem, Y, Iyengar, AJ, Cochrane, AD, et al.The Fontan procedure: contemporary techniques have improved long-term outcomes. Circulation 2007; 116: I157–I164.Google ScholarPubMed
Tseng, SY, Alsaied, T, Barnard, K, Hahn, E, Divanovic, AA, Cnota, JF.Tricuspid atresia with restrictive foramen ovale: a rare combination with implications on fetal growth. Echocardiography 2019; 36: 800–802.CrossRefGoogle ScholarPubMed
Alsaied, T, Bokma, JP, Engel, ME, et al.Predicting long-term mortality after Fontan procedures: a risk score based on 6707 patients from 28 studies. Congenit Heart Dis 2017; 12: 393–398.CrossRefGoogle ScholarPubMed
Alsaied, T, Bokma, JP, Engel, ME, et al.Factors associated with long-term mortality after Fontan procedures: a systematic review. Heart 2017; 103: 104–110.10.1136/heartjnl-2016-310108CrossRefGoogle ScholarPubMed
Jacobs, JP, Mayer, JE Jr, Pasquali, SK, et al.The Society of Thoracic Surgeons Congenital Heart Surgery database: 2019 update on outcomes and quality. Ann Thorac Surg 2019; 107: 691–704.CrossRefGoogle Scholar
Diller, GP, Kempny, A, Alonso-Gonzalez, Ret al.Survival prospects and circumstances of death in contemporary adult congenital heart disease patients under follow-up at a large tertiary centre. Circulation 2015; 132: 2118–2125.CrossRefGoogle Scholar
Mellion, K, Uzark, K, Cassedy, A, et al.Health-related quality of life outcomes in children and adolescents with congenital heart disease. J Pediatr 2014; 164: 781–788 e1.10.1016/j.jpeds.2013.11.066CrossRefGoogle ScholarPubMed
Marino, BS, Tomlinson, RS, Wernovsky, G, et al.Validation of the pediatric cardiac quality of life inventory. Pediatrics 2010; 126: 498–508.10.1542/peds.2009-2973CrossRefGoogle ScholarPubMed
Rychik, J, Atz, AM, Celermajer, DS, et al.Evaluation and management of the child and adult with Fontan irculation: a scientific statement from the American Heart Association. Circulation 2019:CIR0000000000000696. Online ahead of print. PMID: 31256636.CrossRefGoogle Scholar
Daniels, CJ, Bradley, EA, Landzberg, MJ, et al.Fontan-associated liver disease: proceedings from the American College of Cardiology stakeholders meeting, October 1 to 2, 2015, Washington DC. J Am Coll Cardiol 2017; 70: 3173–3194.CrossRefGoogle Scholar
Di Maria, MV, Barrett, C, Rafferty, C, et al.Initiating a Fontan multidisciplinary clinic: decreasing care variability, improving surveillance, and subsequent treatment of Fontan survivors. Congenital Heart Dis 2019.CrossRefGoogle ScholarPubMed
Di Maria, MV, Brown, DW, Cetta, F, et al.Surveillance testing and preventive care after Fontan operation: a multi-institutional survey. Pediatr Cardiol 2019; 40: 110–115.CrossRefGoogle ScholarPubMed
Jenkins, KJ, Beekman Iii, RH, Bergersen, LJ, et al.Databases for assessing the outcomes of the treatment of patients with congenital and paediatric cardiac disease--the perspective of cardiology. Cardiol Young 2008; 18 (Suppl 2): 116–123.CrossRefGoogle ScholarPubMed
Gaies, M, Anderson, J, Kipps, A, et al.Cardiac Networks United: an integrated paediatric and congenital cardiovascular research and improvement network. Cardiol Young 2019; 29: 111–118.CrossRefGoogle ScholarPubMed
Anderson, JB, Brown, DW, Lihn, S, et al.Power of a learning network in congenital heart disease. World J Pediatr Congenit Heart Surg 2019; 10: 66–71.CrossRefGoogle ScholarPubMed
Clauss, SB, Anderson, JB, Lannon, C, et al.Quality improvement through collaboration: the National Pediatric Quality improvement collaborative initiative. Curr Opin Pediatr 2015; 27: 555–562.CrossRefGoogle ScholarPubMed
Anderson, JB, Beekman, RH, 3rd, Kugler, JD, et al.Improvement in interstage survival in a National Pediatric Cardiology Learning Network. Circ Cardiovasc Qual Outcomes 2015; 8: 428–436.CrossRefGoogle Scholar
Britto, MT, Fuller, SC, Kaplan, HC, et al.Using a network organisational architecture to support the development of learning healthcare systems. BMJ Qual Saf 2018; 27: 937–946.CrossRefGoogle ScholarPubMed
Olsen, LA, Aisner, D, McGinnis, JM eds. The Learning Healthcare System: Workshop Summary. National Academies Press, Washington (DC), 2007.Google Scholar
Lorts, A, Smyth, L, Gajarski, RJ, et al.The creation of a pediatric health care learning network: the ACTION quality improvement collaborative. ASAIO J 2020; 66: 441–446.10.1097/MAT.0000000000001133CrossRefGoogle ScholarPubMed
Kugler, JD, Beekman Iii, RH, Rosenthal, GL, et al.Development of a pediatric cardiology quality improvement collaborative: from inception to implementation. From the Joint Council on Congenital Heart Disease Quality Improvement Task Force. Congenit Heart Dis 2009; 4: 318–328.CrossRefGoogle ScholarPubMed
Gerald, J.Langley, RDM, Nolan, KM, Nolan, TW, Norman, CL, Provost, LP. The Improvement Guide: A Practical Approach to Enhancing Organizational Performance. Jossey-Bass A Wiley Imprint, 2009: 15–25.Google Scholar
Gordon-Walker, TT, Bove, K, Veldtman, G.Fontan-associated liver disease: a review. J Cardiol 2019; 74: 223–232.CrossRefGoogle ScholarPubMed
Khan, A, Ramsey, K, Ballard, C, et al.Limited accuracy of administrative data for the identification and classification of adult congenital heart disease. J Am Heart Assoc 2018; 7: e009395 .CrossRefGoogle ScholarPubMed
Mutluer, FO, Celiker, A.General concepts in adult congenital deart disease. Balkan Med J 2018; 35: 18–29.CrossRefGoogle Scholar
Marino, BS, Cassedy, A, Drotar, D, Wray, J.The impact of neurodevelopmental and psychosocial outcomes on health-related quality of life in survivors of congenital heart disease. J Pediatr 2016; 174: 11–22 e2.CrossRefGoogle ScholarPubMed
Iyengar, AJ, Winlaw, DS, Galati, JC, et al.The Australia and New Zealand Fontan registry: description and initial results from the first population-based Fontan registry. Inter Med J 2014; 44: 148–155.10.1111/imj.12318CrossRefGoogle ScholarPubMed
Improve Care Now. https://www.improvecarenow.org/purpose-success. Accessed on 5-15-2020.Google Scholar
Chang, AC.Artificial intelligence in pediatric cardiology and cardiac surgery: irrational hype or paradigm shift? Ann Pediatr Cardiol 2019; 12: 191–194.CrossRefGoogle ScholarPubMed