Open Access

ARTICLE

A multinational observational investigation of illness perceptions and quality of life among patients with a Fontan circulation

Christina E. Holbein¹, Nicholas D. Fogleman^1,2, Kevin Hommel¹, Silke Apers³, Jessica Rassart³, Philip Moons^3,4, Koen Luyckx³, Maayke A. Sluman⁵, Junko Enomoto⁶, Bengt Johansson⁷, Hsiao-Ling Yang⁸, Mikael Dellborg^4,9, Raghavan Subramanyan¹⁰, Jamie L. Jackson¹¹, Werner Budts^3,12, Adrienne H. Kovacs¹³, Stacey Morrison¹, Martha Tomlin¹, Kathy Gosney¹, Alexandra Soufi¹⁴, Katrine Eriksen¹⁵, Corina Thomet^3,16, Malin Berghammer^4,17, Luis Alday¹⁸, Edward Callus¹⁹, Susan M Fernandes²⁰, Maryanne Caruana²¹, Samuel Menahem²², Stephen C. Cook²³, Gwen R. Rempel²⁴, Kamila White²⁵, Paul Khairy²⁶, Shelby Kutty²⁷, Gruschen Veldtman¹

1 Cincinnati Children’s Hospital Medical Center, Cincinnati, Ohio, USA
2 University of Louisville, Louisville, Kentucky, USA
3 KU Leuven, Leuven, Belgium
4 University of Gothenburg, Gothenburg, Sweden
5 Amsterdam Medical Center, Amsterdam, The Netherlands
6 Chiba Cardiovascular Center, Chiba, Japan
7 Umeå University, Umeå, Sweden
8 National Taiwan University, Taipei, Taiwan
9 Adult Congenital Heart Unit, Sahlgrenska University Hospital, Gothenburg, Sweden
10 Frontier Lifeline Hospital, Dr. K. M. Cherian Heart Foundation, Chennai, India
11 Nationwide Children’s Hospital, Columbus, Ohio, USA
12 University Hospitals Leuven and Department of Cardiovascular Sciences, Leuven, Belgium
13 Oregon Health & Science University, Portland, Oregon, USA
14 Hospital Louis Pradel, Lyon, France
15 Oslo University Hospital, Oslo, Norway
16 University Hospital Bern, University of Bern, Bern, Switzerland
17 University West, Trollhättan, Sweden
18 Hospital de Ninos, C ~ ordoba, Argentina
19 IRCCS Policlinico San Donato Hospital, Milan, Italy
20 Stanford University, Palo Alto, California, USA
21 Mater Dei Hospital, Msida, Malta
22 Monash Medical Center, Melbourne, Australia
23 Helen DeVos Children’s Hospital, Grand Rapids, Michigan, USA
24 University of Alberta, Edmonton, Canada
25 Washington University and Barnes Jewish Heart & Vascular Center, University of Missouri, Saint Louis, Missouri, USA
26 Montreal Heart Institute, Montreal, Canada
27 Children’s Hospital & Medical Center, Omaha, Nebraska, USA

* Corresponding Author: Gruschen Veldtman, Adolescent and Adult Congenital Heart Program, 3333 Burnett Avenue, Cincinnati, Ohio. Email: