Does functional health status predict health-related quality of life in children after Fontan operation?

Cardiology in the Young

Volumn 26, Issue 3, 2016, Pages 459-468

  Dulfer, Karolijn ^a   Bossers, Sjoerd S M ^a   Utens, Elisabeth M W J ^a   Duppen, Nienke ^a   Kuipers, Irene M ^b   Kapusta, Livia ^c,d   Van Iperen, Gabrielle ^e   Schokking, Michiel ^c   Ten Harkel, Arend D J ^f   Takken, Tim ^e   Helbing, Willem A ^a  

^a SOPHIA CHILDREN S HOSPITAL   (Netherlands)

^b ACADEMIC MEDICAL CENTER   (Netherlands)

^c RADBOUD UNIVERSITY MEDICAL CENTER   (Netherlands)

^d TEL AVIV SOURASKY MEDICAL CENTER   (Israel)

^e UNIVERSITY MEDICAL CENTER UTRECHT   (Netherlands)

^f LEIDEN UNIVERSITY MEDICAL CENTER   (Netherlands)

Author keywords

congenital heart disease; Fontan circulation; quality of life

Indexed keywords

ADOLESCENT; ARTICLE; CHILD; CLINICAL PROTOCOL; COGNITION; CONTROLLED STUDY; EMOTIONALITY; EXERCISE TEST; FEMALE; FONTAN PROCEDURE; FUNCTIONAL STATUS; HEALTH STATUS; HEART RHYTHM; HUMAN; MAJOR CLINICAL STUDY; MALE; MEDICAL LITERATURE; MOTOR PERFORMANCE; NUCLEAR MAGNETIC RESONANCE IMAGING; OUTCOME ASSESSMENT; PREDICTIVE VALUE; PROSPECTIVE STUDY; QUALITY OF LIFE; SOCIAL STATUS; CLINICAL TRIAL; CROSS-SECTIONAL STUDY; HEART DEFECTS, CONGENITAL; HEART VENTRICLE; MULTICENTER STUDY; MULTIVARIATE ANALYSIS; NETHERLANDS; PARENT; PATHOPHYSIOLOGY; QUESTIONNAIRE; TREATMENT OUTCOME;

ADOLESCENT; CHILD; CROSS-SECTIONAL STUDIES; EXERCISE TEST; FEMALE; FONTAN PROCEDURE; HEALTH STATUS; HEART DEFECTS, CONGENITAL; HEART VENTRICLES; HUMANS; MAGNETIC RESONANCE IMAGING; MALE; MULTIVARIATE ANALYSIS; NETHERLANDS; PARENTS; PROSPECTIVE STUDIES; QUALITY OF LIFE; SURVEYS AND QUESTIONNAIRES; TREATMENT OUTCOME;

EID: 84928254328     PISSN: 10479511     EISSN: 14671107     Source Type: Journal    
DOI: 10.1017/S1047951115000426     Document Type: Article

References (42)

1. d'Udekem Y, Iyengar AJ, Cochrane AD, et al. The Fontan procedure: contemporary techniques have improved long-term outcomes. Circulation 2007; 116: I157-I164.
2. Robbers-Visser D, Miedema M, Nijveld A, et al. Results of staged total cavopulmonary connection for functionally univentricular hearts; comparison of intra-atrial lateral tunnel and extracardiac conduit. Eur J Cardiothorac Surg 2010; 37: 934-941.
3. Anderson PA, Sleeper LA, Mahony L et al. Contemporary outcomes after the Fontan procedure: A Pediatric Heart Network multicenter study. J Am Coll Cardiol 2008; 52: 85-98.
4. Marino BS, Shera D, Wernovsky G, et al. The development of the pediatric cardiac quality of life inventory: A quality of life measure for children and adolescents with heart disease. Qual Life Res 2008; 17: 613-626.
5. Idorn L, Jensen AS, Juul K, et al. Quality of life and cognitive function in Fontan patients, a population-based study. Int J Cardiol 2013; 168: 3230-3235.
6. Dulfer K, Helbing WA, Duppen N, Utens EM. Associations between exercise capacity, physical activity, and psychosocial functioning in children with congenital heart disease: A systematic review. Eur J Prev Cardiol 2014; 21: 1200-1215.
7. McCrindle BW, Zak V, Breitbart RE, et al. The Relationship of patient medical and laboratory characteristics to changes in functional health status in children and adolescents after the Fontan procedure. Pediatr Cardiol 2014; 35: 632-640.
8. McCrindle BW, Zak V, Pemberton VL, et al. Functional health status in children and adolescents after Fontan: comparison of generic and disease-specific assessments. Cardiol Young 2013: 1-9.
9. Czosek RJ, Bonney WJ, Cassedy A, et al. Impact of cardiac devices on the quality of life in pediatric patients. Circ Arrhythm Electrophysiol 2012; 5: 1064-1072.
10. Robbers-Visser D, Jan Ten Harkel D, Kapusta L, et al. Usefulness of cardiac magnetic resonance imaging combined with low-dose dobutamine stress to detect an abnormal ventricular stress response in children and young adults after Fontan operation at young age. Am J Cardiol 2008; 101: 1657-1662.
11. Luijnenburg SE, Robbers-Visser D, Moelker A, Vliegen HW, Mulder BJ, Helbing WA. Intra-observer and interobserver variability of biventricular function, volumes and mass in patients with congenital heart disease measured by CMR imaging. Int J Cardiovasc Imaging 2010; 26: 57-64.
12. Bossers SS, HelbingWA, Duppen N, et al. Exercise capacity in children after total cavopulmonary connection: lateral tunnel versus extracardiac conduit technique. J Thorac Cardiovasc Surg 2014; 148: 1490-1497
13. Ten Harkel AD, Takken T, Van Osch-Gevers M, Helbing WA. Normal values for cardiopulmonary exercise testing in children. Eur J Cardiovasc Prev Rehabil 2011; 18: 48-54.
14. Cohen MI, Bridges ND, Gaynor JW, et al. Modifications to the cavopulmonary anastomosis do not eliminate early sinus node dysfunction. J Thorac Cardiovasc Surg 2000; 120: 891-900.
15. Mason JW, Ramseth DJ, Chanter DO, Moon TE, Goodman DB, Mendzelevski B. Electrocardiographic reference ranges derived from 79, 743 ambulatory subjects. J Electrocardiol 2007; 40: 228-234.
16. Rijnbeek PR, Witsenburg M, Schrama E, Hess J, Kors JA. New normal limits for the paediatric electrocardiogram. Eur Heart J 2001; 22: 702-711.
17. Salameh A, Gebauer RA, Grollmuss O, Vit P, Reich O, Janousek J. Normal limits for heart rate as established using 24-hour ambulatory electrocardiography in children and adolescents. Cardiol Young 2008; 18: 467-472.
18. Epstein AE, DiMarco JP, Ellenbogen KA, et al. ACC/AHA/HRS 2008 Guidelines for device-based Therapy of Cardiac Rhythm Abnormalities: A report of the American College of Cardiology/ American Heart Association Task Force on practice guidelines (Writing Committee to Revise the ACC/AHA/NASPE 2002 Guideline Update for Implantation of Cardiac Pacemakers and Antiarrhythmia Devices): developed in collaboration with the American Association for Thoracic Surgery and Society of Thoracic Surgeons. Circulation 2008; 117: e350-e408.
19. Deal BJ. Late arrhythmias following Fontan surgery. World J Pediatr Congenit Heart Surg 2012; 3: 194-200.
20. Cohen MI, Wernovsky G, Vetter VL, et al. Sinus node function after a systematically staged Fontan procedure. Circulation 1998; 98: II352-II358; discussion II358-II359.
21. Dilawar M, Bradley SM, Saul JP, Stroud MR, Balaji S. Sinus node dysfunction after intraatrial lateral tunnel and extracardiac conduit Fontan procedures. Pediatr Cardiol 2003; 24: 284-288.
22. Vogels T, Bruil J, Koopman H, Fekkes M, Verrips GHW. TACQOL CF 12-15 Manual. Developed by Leiden Center for Child Health and Pediatrics LUMC-TNO 2004.
23. Verrips GH, VogelsAG, denOuden AL, PanethN, Verloove-Vanhorick SP. Measuring health-related quality of life in adolescents: Agreement between raters and between methods of administration. Child Care Health Dev 2000; 26: 457-469.
24. Khairy P, Fernandes SM, Mayer JE Jr., et al. Long-term survival, modes of death, and predictors of mortality in patients with Fontan surgery. Circulation 2008; 117: 85-92.
25. McCrindle BW, Zak V, Sleeper LA, et al. Laboratory measures of exercise capacity and ventricular characteristics and function are weakly associated with functional health status after Fontan procedure. Circulation 2010; 121: 34-42.
26. Appelhans BM, Luecken LJ. Heart rate variability as an index of regulated emotional responding. Rev General Psychol 2006; 10: 229.
27. van den Bosch AE, Roos-Hesselink JW, Van Domburg R, Bogers AJ, Simoons ML, Meijboom FJ. Long-term outcome and quality of life in adult patients after the Fontan operation. Am J Cardiol 2004; 93: 1141-1145.
28. Khairy P, Poirier N, Mercier LA. Univentricular heart. Circulation 2007; 115: 800-812.
29. McCrindle BW, Williams RV, Mitchell PD, et al. Relationship of patient and medical characteristics to health status in children and adolescents after the Fontan procedure. Circulation 2006; 113: 1123-1129.
30. Moons P, Van Deyk K, Budts W, De Geest S. Caliber of quality-oflife assessments in congenital heart disease: A plea for more conceptual and methodological rigor. Arch Pediatr Adolesc Med 2004; 158: 1062-1069.
31. McCrindle BW, Williams RV, Mital S, et al. Physical activity levels in children and adolescents are reduced after the Fontan procedure, independent of exercise capacity, and are associated with lower perceived general health. Arch Dis Child 2007; 92: 509-514.
32. Snookes SH, Gunn JK, Eldridge BJ, et al. A systematic review of motor and cognitive outcomes after early surgery for congenital heart disease. Pediatrics 2010; 125: e818-e827.
33. Marino BS, Lipkin PH, Newburger JW, et al. Neurodevelopmental outcomes in children with congenital heart disease: evaluation and management: A scientific statement from the American Heart Association. Circulation 2012; 126: 1143-1172.
34. Saiki H, Kurishima C, Masutani S, Senzaki H. Cerebral circulation in patients with Fontan circulation: Assessment by carotid arterial wave intensity and stiffness. Ann Thorac Surg 2014; 97: 1394-1399.
35. Blaufox AD, Sleeper LA, Bradley DJ, et al. Functional status, heart rate, and rhythm abnormalities in 521 Fontan patients 6 to 18 years of age. J Thorac Cardiovasc Surg 2008; 136: 100-107; 107 e101.
36. Sarajuuri A, Jokinen E, Mildh L, et al. Neurodevelopmental burden at age 5 years in patients with univentricular heart. Pediatrics 2012; 130: e1636-e1646.
37. Sugimoto A, Ota N, Ibuki K, et al. Risk factors for adverse neurocognitive outcomes in school-aged patients after the Fontan operation. Eur J Cardiothorac Surg 2013; 44: 454-461.
38. Goldberg CS, Schwartz EM, Brunberg JA, et al. Neurodevelopmental outcome of patients after the Fontan operation: A comparison between children with hypoplastic left heart syndrome and other functional single ventricle lesions. J Pediatr 2000; 137: 646-652.
39. Blaufox AD, Sleeper LA, Bradley DJ, et al. Functional status, heart rate, and rhythm abnormalities in 521 Fontan patients 6 to 18 years of age. J Thorac Cardiovasc Surg 2008; 136: 100-107; e101.
40. Williams IA, Sleeper LA, Colan SD, et al. Functional state following the Fontan procedure. Cardiol Young 2009; 19: 320-330.
41. Jenkins PC, Chinnock RE, Jenkins KJ, et al. Decreased exercise performance with age in children with hypoplastic left heart syndrome. J Pediatr 2008; 152: 507-512.
42. Hager A, Hess J. Comparison of health related quality of life with cardiopulmonary exercise testing in adolescents and adults with congenital heart disease. Heart 2005; 91: 517-520.