Christina E Holbein1, Nicholas D Fogleman1,2, Kevin Hommel1, Silke Apers3, Jessica Rassart3, Philip Moons3,4, Koen Luyckx3, Maayke A Sluman5, Junko Enomoto6, Bengt Johansson7, Hsiao-Ling Yang8, Mikael Dellborg4,9, Raghavan Subramanyan10, Jamie L Jackson11, Werner Budts3,12, Adrienne H Kovacs13, Stacey Morrison1, Martha Tomlin1, Kathy Gosney1, Alexandra Soufi14, Katrine Eriksen15, Corina Thomet3,16, Malin Berghammer4,17, 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 Niños, Córdoba, 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.
Abstract
OBJECTIVE: First, to compare QOL and illness perceptions between patients with a Fontan circulation and patients with anatomically simple defects (ie, atrial septal defects [ASD] or ventricular septal defects [VSD]). Second, to explore illness perceptions as a mediator of the association between congenital heart disease (CHD) diagnosis and QOL. DESIGN: Cross-sectional observational study. SETTING: Twenty-four cardiology centers from 15 countries across five continents. PATIENTS: Four hundred thirty-five adult patients with congenital heart disease (177 Fontan and 258 ASD/VSD) ages 18-83 years. OUTCOME MEASURES: QOL and illness perceptions were assessed by the Satisfaction With Life Scale and the Brief Illness Perceptions Questionnaire, respectively. RESULTS: Patients with a Fontan circulation reported lower QOL (Wald Z = -3.59, p = <.001) and more negative perceptions of their CHD (Wald Z = -7.66, p < .001) compared with patients with ASD/VSD. After controlling for demographics, anxiety, depressive symptoms, and New York Heart Association functional class, path analyses revealed a significant mediation model, αβ = 0.15, p = .002, 95% CI = 0.06-0.25, such that CHD diagnosis was indirectly related to QOL through illness perceptions. CONCLUSIONS: The Fontan sample's more negative perceptions of CHD were likely a reflection of life with a more complex defect. Illness perceptions appear to account for unique differences in QOL between groups of varying CHD complexity. Psychosocial screening and interventions may be important treatment components for patients with CHD, particularly those with Fontan circulations.
OBJECTIVE: First, to compare QOL and illness perceptions between patients with a Fontan circulation and patients with anatomically simple defects (ie, atrial septal defects [ASD] or ventricular septal defects [VSD]). Second, to explore illness perceptions as a mediator of the association between congenital heart disease (CHD) diagnosis and QOL. DESIGN: Cross-sectional observational study. SETTING: Twenty-four cardiology centers from 15 countries across five continents. PATIENTS: Four hundred thirty-five adult patients with congenital heart disease (177 Fontan and 258 ASD/VSD) ages 18-83 years. OUTCOME MEASURES: QOL and illness perceptions were assessed by the Satisfaction With Life Scale and the Brief Illness Perceptions Questionnaire, respectively. RESULTS:Patients with a Fontan circulation reported lower QOL (Wald Z = -3.59, p = <.001) and more negative perceptions of their CHD (Wald Z = -7.66, p < .001) compared with patients with ASD/VSD. After controlling for demographics, anxiety, depressive symptoms, and New York Heart Association functional class, path analyses revealed a significant mediation model, αβ = 0.15, p = .002, 95% CI = 0.06-0.25, such that CHD diagnosis was indirectly related to QOL through illness perceptions. CONCLUSIONS: The Fontan sample's more negative perceptions of CHD were likely a reflection of life with a more complex defect. Illness perceptions appear to account for unique differences in QOL between groups of varying CHD complexity. Psychosocial screening and interventions may be important treatment components for patients with CHD, particularly those with Fontan circulations.
Authors: Silke Apers; Adrienne H Kovacs; Koen Luyckx; Corina Thomet; Werner Budts; Junko Enomoto; Maayke A Sluman; Jou-Kou Wang; Jamie L Jackson; Paul Khairy; Stephen C Cook; Shanthi Chidambarathanu; Luis Alday; Katrine Eriksen; Mikael Dellborg; Malin Berghammer; Eva Mattsson; Andrew S Mackie; Samuel Menahem; Maryanne Caruana; Gruschen Veldtman; Alexandra Soufi; Anitra W Romfh; Kamila White; Edward Callus; Shelby Kutty; Steffen Fieuws; Philip Moons Journal: J Am Coll Cardiol Date: 2016-05-17 Impact factor: 24.094
Authors: Karen Uzark; Victor Zak; Peter Shrader; Brian W McCrindle; Elizabeth Radojewski; James W Varni; Kaitlyn Daniels; Jill Handisides; Kevin D Hill; Linda M Lambert; Renee Margossian; Victoria L Pemberton; Wyman W Lai; Andrew M Atz Journal: J Pediatr Date: 2015-12-10 Impact factor: 4.406
Authors: Claire E O'Donovan; Liz Painter; Boris Lowe; Hayley Robinson; Elizabeth Broadbent Journal: Cardiol Young Date: 2015-01-20 Impact factor: 1.093
Authors: Caroline Andonian; Jürgen Beckmann; Sabina Biber; Peter Ewert; Sebastian Freilinger; Harald Kaemmerer; Renate Oberhoffer; Lars Pieper; Rhoia Clara Neidenbach Journal: Cardiovasc Diagn Ther Date: 2018-12