Quality of life in children and young adults with cardiac conditions

Current Opinion in Cardiology

Volumn 28, Issue 2, 2013, Pages 115-121

  Ferguson, Meaghan K ^a   Kovacs, Adrienne H ^a  

^a UNIVERSITY HEALTH NETWORK   (Canada)

Author keywords

congenital heart disease; outcomes; quality of life

Indexed keywords

CARDIAC PATIENT; CARDIOVASCULAR RISK; CHILDHOOD DISEASE; CONGENITAL HEART DISEASE; CONGENITAL HEART DISEASE QUALITY OF LIFE QUESTIONNAIRE; DEVELOPMENTAL DISORDER; DISEASE SEVERITY; EMOTIONAL STABILITY; EXERCISE; FALLOT TETRALOGY; FONTAN PROCEDURE; GRAFT RECIPIENT; HEART ARRHYTHMIA; HEART DISEASE; HEART FAILURE; HEART TRANSPLANTATION; HUMAN; IMPLANTABLE CARDIOVERTER DEFIBRILLATOR; LIFE SATISFACTION; MENTAL INSTABILITY; NAMED INVENTORIES, QUESTIONNAIRES AND RATING SCALES; OUTCOME ASSESSMENT; PATIENT SATISFACTION; PRIORITY JOURNAL; PROBLEM SOLVING; PSYCHOSOCIAL DEVELOPMENT; QUALITY OF LIFE; REVIEW; SCORING SYSTEM; SELF REPORT; SOCIAL NETWORK; SOCIAL PSYCHOLOGY; SOCIAL SUPPORT;

ADOLESCENT; CHILD; HEALTH STATUS; HEART DEFECTS, CONGENITAL; HEART DISEASES; HUMANS; PARENTS; QUALITY OF LIFE; SOCIAL SUPPORT; STRESS, PSYCHOLOGICAL; YOUNG ADULT;

EID: 84873447040     PISSN: 02684705     EISSN: 15317080     Source Type: Journal    
DOI: 10.1097/HCO.0b013e32835d7eba     Document Type: Review

References (55)

1. Moons P, Bovijn L, Budts W, et al. Temporal trends in survival to adulthood among patients born with congenital heart disease from 1970 to 1992 in Belgium. Circulation 2010; 122:2264-2272.
2. Benden C, Aurora P, Edwards LB, et al. The Registry of the International Society for Heart and Lung Transplantation: Fourteenth Pediatric Lung and HeartYLung Transplantation Report Y 2011. J Heart Lung Transplant 2011; 30:1123-1132.
3. Latal B, Helfricht S, Fischer JE, et al. Psychological adjustment and quality of life in children and adolescents following open-heart surgery for congenital heart disease: A systematic review. BMC Pediatr 2009; 9:6.
4. Bellinger DC, Newburger JW. Neuropsychological, psychosocial, and qualityof-life outcomes in children and adolescents with congenital heart disease. Prog Pediatr Cardiol 2010; 29:87-92.
5. Marino BS, Uzark K, Ittenbach R, Drotar D. Evaluation of quality of life in children with heart disease. Prog Pediatr Cardiol 2010; 29:131-138.
6. Lambert LM, Minich LL, Newburger JW, et al. Parent- versus child-reported functional health status after the Fontan procedure. Pediatrics 2009; 124:e942-e949.
7. Moons P. Patient-reported outcomes in congenital cardiac disease: Are they as good as you think they are? Cardiol Young 2010; 20 (Suppl. 3):143-148.
8. Moons P, Budts W, De Geest S. Critique on the conceptualisation of quality of life: A review and evaluation of different conceptual approaches. Int J Nurs Stud 2006; 43:891-901.
9. Moons P, Van Deyk K, Marquet K, et al. Individual quality of life in adults with congenital heart disease: A paradigm shift. Eur Heart J 2005; 26:298-307.
10. Moons P, Marquet K, Budts W, De Geest S. Validity, reliability and responsiveness of the 'Schedule for the Evaluation of Individual Quality of Life-Direct Weighting' (SEIQoL-DW) in congenital heart disease. Health Qual Life Outcomes 2004; 2:27.
11. Shearer K, Rempel GR, Norris CM, Magill-Evans J. 'It's No Big Deal': Adolescents with congenital heart disease. J Pediatr Nurs 2012. [Epub ahead of print]
12. Garcia Guerra G, Robertson CM, Alton GY, et al. Quality of life 4 years after complex heart surgery in infancy. J Thorac Cardiovasc Surg 2012. [Epub ahead of print]
13. Uzark K, Jones K, Burwinkle TM, Varni JW. The Pediatric Quality of Life Inventory in children with heart disease. Prog Pediatr Cardiol 2003; 18:141-149.
14. Varni JW, Seid M, Kurtin PS. 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 2001; 39:800-812.
15. Uzark K, King E, Spicer R, et al. The clinical utility of health-related quality of life assessment in pediatric cardiology outpatient practice. Congenit Heart Dis 2012. [Epub ahead of print]
16. Macran S, Birks Y, Parsons J, et al. The development of a new measure of quality of life for children with congenital cardiac disease. Cardiol Young 2006; 16:165-172.
17. 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.
18. Marino BS, Drotar D, Cassedy A, et al. External validity of the Pediatric Cardiac Quality of Life Inventory. Qual Life Res 2011; 20:205-214.
19. Pulgaron ER, Wile D, Schneider K, et al. Quality of life and psychosocial functioning of children with cardiac arrhythmias. Cardiol Young 2012; 18: 1-7.
20. Tahirovic E, Begic H, Tahirovic H, Varni JW. Quality of life in children after cardiac surgery for congenital heart disease. Coll Antropol 2011; 35:1285-1290.
21. Kwon EN, Mussatto K, Simpson PM, et al. Children and adolescents with repaired tetralogy of fallot report quality of life similar to healthy peers. Congenit Heart Dis 2011; 6:18-27.
22. Uzark K, Griffin L, Rodriguez R, et al. Quality of life in pediatric heart transplant recipients: A comparison with children with and without heart disease. J Heart Lung Transplant 2012; 31:571-578.
23. Luyckx K, Goossens E, Van Damme C, Moons P. Identity formation in adolescents with congenital cardiac disease: A forgotten issue in the transition to adulthood. Cardiol Young 2011; 21:411-420.
24. Foster E, Graham TP Jr, Driscoll DJ, et al. Task force 2: Special healthcare needs of adults with congenital heart disease. J Am Coll Cardiol 2001; 37:1176-1183.
25. Reid GJ, Webb GD, McCrindle BW, et al. Health behaviors among adolescents and young adults with congenital heart disease. Congenit Heart Dis 2008; 3:16-25.
26. Moons P, Van Deyk K, De Bleser L, et al. Quality of life and health status in adults with congenital heart disease: A direct comparison with healthy counterparts. Eur J Cardiovasc Prev Rehabil 2006; 13:407-413.
27. Silva AM, Vaz C, Areias ME, et al. Quality of life of patients with congenital heart diseases. Cardiol Young 2011; 21:670-676.
28. Teixeira FM, Coelho RM, Proenca C, et al. Quality of life experienced by adolescents and young adults with congenital heart disease. Pediatr Cardiol 2011; 32:1132-1138.
29. Bons L, Ploeg M. Do adults with congenital heart disease have a good quality of life? A systematic review. Erasmus J Med 2012; 2:16-19.
30. Pike NA, Evangelista LS, Doering LV, et al. Quality of life, health status, and depression: comparison between adolescents and adults after the Fontan procedure with healthy counterparts. J Cardiovasc Nurs 2012; 27:539-546.
31. Development of the World Health Organization WHOQOL-BREF quality of life assessment. The WHOQOL Group. Psychol Med 1998; 28:551-558.
32. Neul SK, Minard CG, Currier H, Goldstein SL. Health-related quality of life functioning over a 2-year period in children with end-stage renal disease. Pediatr Nephrol 2012. [Epub ahead of print]
33. Sattoe JN, van Staa A, Moll HA. The proxy problem anatomized: childYparent disagreement in health related quality of life reports of chronically ill adolescents. Health Qual Life Outcomes 2012; 10:10.
34. Cremeens J, Eiser C, Blades M. Factors influencing agreement between child self-report and parent proxy-reports on the Pediatric Quality of Life Inventory 4.0 (PedsQL) generic core scales. Health Qual Life Outcomes 2006; 4:58.
35. Majnemer A, Shevell M, Law M, et al. Reliability in the ratings of quality of life between parents and their children of school age with cerebral palsy. Qual Life Res 2008; 17:1163-1171.
36. Davis E, Mackinnon A, Waters E. Parent proxy-reported quality of life for children with cerebral palsy: Is it related to parental psychosocial distress? Child Care Health Dev 2012; 38:553-560.
37. Price B. Illness careers: The chronic illness experience. J Adv Nurs 1996; 24:275-279.
38. Goldberg CS, Mussatto K, Licht D, Wernovsky G. Neurodevelopment and quality of life for children with hypoplastic left heart syndrome: current knowns and unknowns. Cardiol Young 2011; 21 (Suppl. 2):88-92.
39. Wang Q, Hay M, Clarke D, Menahem S. The prevalence and predictors of anxiety and depression in adolescents with heart disease. J Pediatr 2012; 161:943-946.
40. 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.
41. Karsdorp PA, Everaerd W, Kindt M, Mulder BJ. Psychological and cognitive functioning in children and adolescents with congenital heart disease: A meta-analysis. J Pediatr Psychol 2007; 32:527-541.
42. Marino BS, Beebe D, Cassedy A, et al. Executive functioning, gross motor ability and mood are key drivers of poorer quality of life in child and adolescent survivors with complex congenital heart disease. J Am Coll Cardiol 2011; 57:E421.
43. Bellinger DC. Are children with congenital cardiac malformations at increased risk of deficits in social cognition? Cardiol Young 2008; 18:3-9.
44. Tong EM, Sparacino PS, Messias DK, et al. Growing up with congenital heart disease: The dilemmas of adolescents and young adults. Cardiol Young 1998; 8:303-309.
45. Kovacs AH, Saidi AS, Kuhl EA, et al. Depression and anxiety in adult congenital heart disease: predictors and prevalence. Int J Cardiol 2009; 137:158-164.
46. Luyckx K, Missotten L, Goossens E, Moons P. Individual and contextual determinants of quality of life in adolescents with congenital heart disease. J Adolesc Health 2012; 51:122-128.
47. Rassart J, Luyckx K, Goossens E, et al. Personality traits, quality of life and perceived health in adolescents with congenital heart disease. Psychol Health 2012. [Epub ahead of print]
48. Menteer J, Beas VN, Chang JC, et al. Mood and health-related quality of life among pediatric patients with heart failure. Pediatr Cardiol 2012. [Epub ahead of print]
49. Gaies MG, Watnick CS, Gurney JG, et al. Health-related quality of life in patients with congenitally corrected transposition of the great arteries. J Thorac Cardiovasc Surg 2011; 142:136-141.
50. Strieper M, Leong T, Bajaj T, et al. Does ablation of supraventricular tachycardia in children with a structurally normal heart improve quality of life? Congenit Heart Dis 2010; 5:587-593.
51. Dunbar SB, Dougherty CM, Sears SF, et al. Educational and psychological interventions to improve outcomes for recipients of implantable cardioverter defibrillators and their families: A scientific statement from the American Heart Association. Circulation 2012; 126:2146-2172.
52. Koopman HM, Vrijmoet-Wiersma CM, Langius JN, et al. Psychological functioning and disease-related quality of life in pediatric patients with an implantable cardioverter defibrillator. Pediatr Cardiol 2012; 33:569-575.
53. Sears SF, Hazelton AG, St Amant J, et al. Quality of life in pediatric patients with implantable cardioverter defibrillators. Am J Cardiol 2011; 107:1023-1027.
54. Rahman B, Macciocca I, Sahhar M, et al. Adolescents with implantable cardioverter defibrillators: A patient and parent perspective. Pacing Clin Electrophysiol 2012; 35:62-72.
55. Lip GY, Lane DA, Millane TA, Tayebjee MH. Psychological interventions for depression in adolescent and adult congenital heart disease. Cochrane Database Syst Rev 2003; CD004394.