Health-related quality of life outcomes in children and adolescents with congenital heart disease

Journal of Pediatrics

Volumn 164, Issue 4, 2014, Pages

  Mellion, Katelyn ^a   Uzark, Karen ^a   Cassedy, Amy ^a   Drotar, Dennis ^a   Wernovsky, Gil ^b   Newburger, Jane W ^c   Mahony, Lynn ^d   Mussatto, Kathy ^e   Cohen, Mitchell ^f   Limbers, Christine ^g   Marino, Bradley S ^a  

^a CINCINNATI CHILDREN'S HOSPITAL MEDICAL CENTER   (United States)

^b CHILDREN S HOSPITAL OF PHILADELPHIA   (United States)

^c BOSTON CHILDREN S HOSPITAL   (United States)

^d UNIVERSITY OF TEXAS AT DALLAS   (United States)

^e Children's Hospital of Wisconsin ^*  (United States)

^f PHOENIX CHILDREN'S HOSPITAL   (United States)

^g BAYLOR UNIVERSITY   (United States)

Author keywords

[No Author keywords available]

Indexed keywords

ADOLESCENT; ARTICLE; ASTHMA; CHILD; CHRONIC DISEASE; CONGENITAL HEART DISEASE; CONTROLLED STUDY; DISEASE SEVERITY; END STAGE RENAL DISEASE; FEMALE; HEART SINGLE VENTRICLE; HUMAN; MAJOR CLINICAL STUDY; MALE; OBESITY; PEDIATRIC QUALITY OF LIFE INVENTORY 4.0 GENERIC CORE SCALE; PRIORITY JOURNAL; QUALITY OF LIFE; SCHOOL CHILD; SCORING SYSTEM; STUDENT T TEST;

ADOLESCENT; CHILD; CHRONIC DISEASE; CROSS-SECTIONAL STUDIES; FEMALE; HEART DEFECTS, CONGENITAL; HEART DISEASES; HUMANS; MALE; QUALITY OF LIFE; RETROSPECTIVE STUDIES;

EID: 84896544743     PISSN: 00223476     EISSN: 10976833     Source Type: Journal    
DOI: 10.1016/j.jpeds.2013.11.066     Document Type: Article

References (38)

1. D. Drotar Measuring health-related quality of life in children and adolescents 1998 Lawrence Erlbaum Mahwah (NJ)
2. J.W. Varni, T.M. Burwinkle, M. Seid, and D. Skarr The PedsQL 4.0 as a pediatric population health measure: feasibility, reliability, and validity Ambul Pediatr 3 2003 329 341 (Pubitemid 37527280)
3. L. Steinberg Cognitive and affective development in adolescence Trends Cogn Sci 9 2005 69 74 (Pubitemid 40173919)
4. J.A. Brothers, M.G. McBride, B.S. Marino, R.S. Tomlinson, M.A. Seliem, and M.H. Pampaloni et al. Exercise performance and quality of life following surgical repair of anomalous aortic origin of a coronary artery in the pediatric population J Thorac Cardiovasc Surg 137 2009 380 384
5. F.A. Casey, B.G. Craig, and H.C. Mulholland Quality of life in surgically palliated complex congenital heart disease Arch Dis Child 70 1994 382 386 (Pubitemid 24183473)
6. F.A. Casey, D.H. Sykes, B.G. Craig, R. Power, and H.C. Mulholland Behavioral adjustment of children with surgically palliated complex congenital heart disease J Pediatr Psychol 21 1996 335 352 (Pubitemid 26152632)
7. A. Gratz, J. Hess, and A. Hager Self-estimated physical functioning poorly predicts actual exercise capacity in adolescents and adults with congenital heart disease Eur Heart J 30 2009 497 504
8. A. Hager, and J. Hess Comparison of health-related quality of life with cardiopulmonary exercise testing in adolescents and adults with congenital heart disease Heart 91 2005 517 520 (Pubitemid 40432788)
9. D. Lunt, T. Briffa, K.N. Briffa, and J. Ramsay Physical activity levels of adolescents with congenital heart disease Aust J Physiother 49 2003 43 49
10. B.W. McCrindle, R.V. Williams, S. Mital, B.J. Clark, J.L. Russell, and G. Klein 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 92 2007 509 514 (Pubitemid 46867270)
11. K. Norozi, V. Gravenhorst, E. Hobbiebrunken, and A. Wessel Normality of cardiopulmonary capacity in children operated on to correct congenital heart defects Arch Pediatr Adolesc Med 159 2005 1063 1068 (Pubitemid 41633367)
12. H.U. Wessel, and M.H. Paul Exercise studies in tetralogy of Fallot: a review Pediatr Cardiol 20 1999 39 47
13. K. Uzark, K. Jones, J. Slusher, C.A. Limbers, T.M. Burwinkle, and J.W. Varni Quality of life in children with heart disease as perceived by children and parents Pediatrics 121 2008 e1060 e1067
14. J.W. Varni, C.A. Limbers, and T.M. Burwinkle Impaired health-related quality of life in children and adolescents with chronic conditions: a comparative analysis of 10 disease clusters and 33 disease categories/severities utilizing the PedsQL 4.0 Generic Core Scales Health Qual Life Outcomes 5 2007 43
15. B.S. Marino, D. Drotar, A. Cassedy, R. Davis, R.S. Tomlinson, and K. Mellion et al. External validity of the Pediatric Cardiac Quality of Life Inventory Qual Life Res 20 2011 205 214
16. B.S. Marino, D. Shera, G. Wernovsky, R.S. Tomlinson, A. Aguirre, and M. Gallagher 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 17 2008 613 626
17. B.S. Marino, R.S. Tomlinson, G. Wernovsky, D. Drotar, J.W. Newburger, and L. Mahony et al. Validation of the Pediatric Cardiac Quality of Life Inventory Pediatrics 126 2010 498 508
18. J.W. Varni, M. Seid, and P.S. Kurtin PedsQL 4.0: reliability and validity of the Pediatric Quality of Life Inventory version 4.0 generic core scales in healthy and patient populations Med Care 39 2001 800 812 (Pubitemid 33686263)
19. M. Fekkes, R.P. Kamphuis, J. Ottenkamp, E. Verrips, T. Vogels, and M. Kamphuis et al. Health-related quality of life in young adults with minor congenital heart disease Psychol Health 16 2001 239 250 (Pubitemid 33677921)
20. B.J. Maron, P.S. Douglas, T.P. Graham, R.A. Nishimura, and P.D. Thompson Task force 1: preparticipation screening and diagnosis of cardiovascular disease in athletes J Am Coll Cardiol 45 2005 1322 1326 (Pubitemid 40528407)
21. A. Hirth, T. Reybrouck, B. Bjarnason-Wehrens, W. Lawrenz, and A. Hoffmann Recommendations for participation in competitive and leisure sports in patients with congenital heart disease: a consensus document Eur J Cardiovasc Prev Rehabil 13 2006 293 299 (Pubitemid 44318637)
22. J.S. Carvalho, E.A. Shinebourne, C. Busst, M.L. Rigby, and A.N. Redington Exercise capacity after complete repair of tetralogy of Fallot: deleterious effects of residual pulmonary regurgitation Br Heart J 67 1992 470 473
23. W.B. de Koning, M. van Osch-Gevers, A.D. Ten Harkel, R.T. van Domburg, A.W. Spijkerboer, and E.M. Utens et al. Follow-up outcomes 10 years after arterial switch operation for transposition of the great arteries: comparison of cardiological health status and health-related quality of life to those of the a normal reference population Eur J Pediatr 167 2008 995 1004
24. E. van Beek, M. Binkhorst, M. de Hoog, P. de Groot, A. van Dijk, and M. Schokking et al. Exercise performance and activity level in children with transposition of the great arteries treated by the arterial switch operation Am J Cardiol 105 2010 398 403
25. D.C. Bellinger, R.A. Jonas, L.A. Rappaport, D. Wypij, G. Wernovsky, and K.C. Kuban et al. Developmental and neurologic status of children after heart surgery with hypothermic circulatory arrest or low-flow cardiopulmonary bypass N Engl J Med 332 1995 549 555
26. J.M. Forbess, K.J. Visconti, D.C. Bellinger, R.J. Howe, and R.A. Jonas Neurodevelopmental outcomes after biventricular repair of congenital heart defects J Thorac Cardiovasc Surg 123 2002 631 639 (Pubitemid 34535071)
27. H.H. Hovels-Gurich, K. Konrad, D. Skorzenski, C. Nacken, R. Minkenberg, and B.J. Messmer et al. Long-term neurodevelopmental outcome and exercise capacity after corrective surgery for tetralogy of Fallot or ventricular septal defect in infancy Ann Thorac Surg 81 2006 958 966 (Pubitemid 43247667)
28. W.T. Mahle, R.R. Clancy, E.M. Moss, M. Gerdes, D.R. Jobes, and G. Wernovsky Neurodevelopmental outcome and lifestyle assessment in school-aged and adolescent children with hypoplastic left heart syndrome Pediatrics 105 2000 1082 1089 (Pubitemid 30243787)
29. G. Wernovsky, K.M. Stiles, K. Gauvreau, T.L. Gentles, A.J. duPlessis, and D.C. Bellinger et al. Cognitive development after the Fontan operation Circulation 102 2000 883 889
30. D.C. Bellinger, J.H. Bernstein, M.W. Kirkwood, L.A. Rappaport, and J.W. Newburger Visual-spatial skills in children after open-heart surgery J Dev Behav Pediatr 24 2003 169 179 (Pubitemid 36943933)
31. D.C. Bellinger, D. Wypij, A.J. duPlessis, L.A. Rappaport, R.A. Jonas, and G. Wernovsky et al. Neurodevelopmental status at eight years in children with dextro-transposition of the great arteries: the Boston Circulatory Arrest Trial J Thorac Cardiovasc Surg 126 2003 1385 1396 (Pubitemid 37449164)
32. H.H. Hovels-Gurich, K. Konrad, D. Skorzenski, B. Herpertz-Dahlmann, B.J. Messmer, and M.C. Seghaye Attentional dysfunction in children after corrective cardiac surgery in infancy Ann Thorac Surg 83 2007 1425 1430 (Pubitemid 46440752)
33. P.M. Kirshbom, T.B. Flynn, R.R. Clancy, R.F. Ittenbach, D.M. Hartman, and S.M. Paridon et al. Late neurodevelopmental outcome after repair of total anomalous pulmonary venous connection J Thorac Cardiovasc Surg 129 2005 1091 1097 (Pubitemid 40631431)
34. J.A. Ballweg, G. Wernovsky, and J.W. Gaynor Neurodevelopmental outcomes following congenital heart surgery Pediatr Cardiol 28 2007 126 133 (Pubitemid 46733842)
35. W.T. Mahle Neurologic and cognitive outcomes in children with congenital heart disease Curr Opin Pediatr 13 2001 482 486 (Pubitemid 33124003)
36. K. Uzark, A. Lincoln, J.J. Lamberti, R.D. Mainwaring, R.L. Spicer, and J.W. Moore Neurodevelopmental outcomes in children with Fontan repair of functional single ventricle Pediatrics 101 1998 630 633 (Pubitemid 28180146)
37. T. Horner, R. Liberthson, and M.S. Jellinek Psychosocial profile of adults with complex congenital heart disease Mayo Clin Proc 75 2000 31 36 (Pubitemid 30035791)
38. C.B. Kopp Emotion-focused coping in young children: self and self-regulatory processes New Dir Child Adolesc Dev 2009 2009 33 46