Quality of life following surgery for congenital cardiac malformations in neonates and infants

Cardiology in the Young

Volumn 15, Issue SUPPL. 1, 2005, Pages 174-178

  Mussatto, Kathleen ^a   Tweddell, James ^b  

^a CHILDREN S HOSPITAL OF WISCONSIN   (United States)

^b MEDICAL COLLEGE OF WISCONSIN   (United States)

Author keywords

[No Author keywords available]

Indexed keywords

CLINICAL TRIAL; CONGENITAL HEART MALFORMATION; CULTURAL FACTOR; HEART SURGERY; HUMAN; HYPOPLASTIC LEFT HEART SYNDROME; LIFE SATISFACTION; LONG TERM CARE; MORBIDITY; NEWBORN PERIOD; OPEN HEART SURGERY; PEDIATRIC SURGERY; PERIOPERATIVE PERIOD; QUALITY OF LIFE; REVIEW; SOCIAL PSYCHOLOGY; SURVIVAL RATE; TREATMENT OUTCOME; ADAPTIVE BEHAVIOR; CHILD DEVELOPMENT; FEMALE; INFANT; MALE; METHODOLOGY; NEWBORN; PHYSIOLOGY; POSTOPERATIVE COMPLICATION; PROGNOSIS; PSYCHOLOGICAL ASPECT; PSYCHOLOGY; RISK ASSESSMENT;

ADAPTATION, PSYCHOLOGICAL; CARDIAC SURGICAL PROCEDURES; CHILD DEVELOPMENT; FEMALE; HEART DEFECTS, CONGENITAL; HUMANS; INFANT; INFANT, NEWBORN; MALE; POSTOPERATIVE COMPLICATIONS; PROGNOSIS; PSYCHOLOGY; QUALITY OF LIFE; RISK ASSESSMENT;

EID: 21844435494     PISSN: 10479511     EISSN: 14671107     Source Type: Journal    
DOI: 10.1017/S1047951105001253     Document Type: Review

References (35)

1. Ohye RG, Bove EL. Current topics in congenital heart disease. In: Allen HD, Gutgesell HP, Clark EB, Driscoll DJ (eds). Moss and Adams' Heart Disease in Infants, Children and Adolescents, 6th edn. Lippincott Williams & Wilkins, Philadelphia, PA, USA, 2001, pp 382-384.
2. DeMaso DR, Campis LK. The impact of maternal perceptions and medical severity on the adjustment of children with congenital heart disease. J Pediatr Psychol 1991; 16: 137-149.
3. Brandhagen DJ, Feldt RH, Williams DE. Long-term psychologic implications of congenital heart disease: A 25-year follow-up. Mayo Clin Proc 1991; 66: 474-479.
4. Knafl KA, Deatrick JA. The challenge of normalization for families of children with chronic conditions. Pediatric Nursing 2002; 28: 49-53.
5. Elliott MJ. A European perspective on the management of hypoplastic left heart syndrome. Cardiol Young 2004; 14 (Suppl 1): 41-46.
6. Eiser C, Morse R. A review of measures of quality of life for children with chronic illness. Arch Disease Child 2001; 84: 205-211.
7. Frey MA. Health-related quality of life: Promises and pitfalls. J Child and Family Nursing 2001; 4: 63-67.
8. World Health Organization. Constitution of the World Health Organization basic document. Geneva, Switzerland: The Organization; 1948.
9. Kozinetz CA, Warren RW, Berseth CL, Aday LA, Sachdeva R, Kirkland RT. Health status of children with special health care needs: Measurement issues and instruments. Clin Pediatr 1999; 5: 25-33.
10. 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.
11. Wolinsky FD, Wyrwich KW, Nienaber NA, Tierney WM. Genetic versus disease-specific health status measures. Evaluation and the Health Professions 1998; 21: 216-243.
12. Uzark K, Jones K, Burwinkle TM, Varni JW. The Pediatric Quality of Life Inventory™ in children with heart disease. Progress in Pediatric Cardiology 2003; 18: 141-148.
13. Marino B. Update on the development of a CHD specific instrument to assess quality of life. Proceedings of Cardiology 2004 - Seventh Annual Update on Pediatric Cardiovascular Disease. February 28, 2004.
14. Dunbar-Masterson C, Wypij D, Bellinger DC, Rappaport LA, Baker AL, Jonas RA, Newburger JW. General health status of children with d-transposition of the great arteries after the arterial switch operation. Circulation 2001; 104 (Suppl I): I138-I142.
15. Connolly D, Rutkowski M, Auslender M, Artman. Measuring health-related quality of life in children with heart disease. Appl Nurs Res 2002; 15: 74-80.
16. Moyen Laane K, Meberg A, Otterstad JE, et al. Quality of life in children with congenital heart defects. Acta Pediatr 1997; 86: 975-980.
17. Saliba Z, Butera G, Bonnet D, et al. Quality of life and perceived health status in surviving adults with univentricular heart. Heart 2001; 86: 69-73.
18. Mahle WT, Clancy RR, Moss EM, Gerdes M, Jobes DR, Wernovsky G. Neurodevelopmental outcome and lifestyle assessment in school-aged and adolescent children with hypoplastic left heart syndrome. Pediatrics 2000; 105: 1082-1080.
19. Kamphuis M, Ottenkamp J, Vliegen HW, et al. Health related quality of life and health status in adult survivors with previously operated complex congenital heart disease. Heart 2002; 87: 356-362.
20. Lane DA, Lip GYH, Millane TA. Quality of life in adults with congenital heart disease. Heart 2002; 88: 71-75.
21. Williams DL, Gelijns AC, Moskowitz AJ, et al. Hypoplastic left heart syndrome: Valuing the survival. J Thorac Cardiovasc Surg 2000; 119: 720-731.
22. Kendall L, Lewin RJ, Parsons JM, Veldtman GR, Quirk J, Hardman GE. Factors associated with self-perceived state of health in adolescents with congenital cardiac disease attending paediatric cardiologic clinics. Cardiol Young 2001; 11: 431-438.
23. Salzer-Muhar U, Herle M, Floquet P, et al. Self-concept in male and female adolescents with congenital heart disease. Clin Pediatr 2002; 41: 17-24.
24. Uzark K, Jones K. Parenting stress and children with heart disease. J Pediatr Health Care 2003; 17: 163-168.
25. Van Horn M, DeMaso DR, Gonzalez-Heydrich J, Dahlmeier-Erickson J. Illness-related concerns of mothers of children with congenital heart disease. J Am Acad Child Adolesc Psychiatry 2001; 40: 847-854.
26. Lawoko S, Soares JJ. Distress and hopelessness among parents of children with congenital heart disease, parents of children with other diseases, and parents of healthy children. J Psychomatic Research 2001; 52: 193-208.
27. Visconti KJ, Saudino KJ, Rappaport LA, Newburger JW, Bellinger DC. Influence of parental stress and social support on the behavioral adjustment of children with transposition of the great arteries. Developmental & Behavioral Pediatrics 2002; 23: 314-321.
28. Tak YR, McCubbin M. Family stress, perceived social support and coping following the diagnosis of a child's congenital heart disease. J Adv Nurs 2001; 39: 190-198.
29. Carey LK, Nicholson BC, Fox RA. Maternal factors related to parenting young children with congenital heart disease. J Pediatr Nurs 2002; 17: 174-183.
30. Torrance GW, Feeny DH, Furlong WJ, Barr RD, Zhang Y, Wang Q. Multiattribute utility function for a comprehensive health status classification system. Health Utilities Index Mark 2. Med Care 1996; 34: 702-722.
31. Stein REK, Jesop DJ. The development of an impact-on-family scale: Preliminary findings. Med Care 1980; 18: 465-472.
32. Harrison H. Making lemonade: A parent's view of "quality of life" studies. J Clin Ethics 2001; 12: 239-250.
33. Wallander JL, Varni JW. Social support and adjustment in chronically ill and handicapped children. Am J Community Psychol 1989; 17: 185-201.
34. Bellinger DC, Wypij D, Duplessis AJ, et al. Neurodevelomental status at eight years in children with dextro-transposition of the great arteries: the Boston Circulatory Arrest Trial. J Thorac Cardiovasc Surg 2003; 126: 1385-1396.
35. Wernovsky G, Newburger J. Neurodevelopmental and developmental morbidity in children with complex congenital heart disease. J Pediatr 2003; 142: 6-8.