Quality of Life Research

, Volume 15, Issue 4, pp 663–673 | Cite as

Health-related Quality of Life in Children and Adolescents after Invasive Treatment for Congenital Heart Disease

  • A. W. Spijkerboer
  • E. M. W. J. Utens
  • W. B. De Koning
  • A. J. J. C. Bogers
  • W. A. Helbing
  • F. C. Verhulst
Article
Accepted:

Abstract

Since the 1980s treatment techniques for congenital heart disease (ConHD) have gradually evolved. Therefore, actual information on the outcomes, including quality of life is required. Health-related quality of life was assessed long-term in four diagnostic groups of children, who underwent invasive treatment for ConHD between 1990 and 1995. The scores on the TNO-AZL Child Quality of Life Questionnaire (TACQOL) of both children with ConHD and their parents were compared with those of a same-aged reference group. The total sample of ConHD children (n = 113, 8–15 years old) obtained significantly lower mean scores on motor functioning, cognitive functioning, and positive emotional functioning than reference peers, reflecting an experience of poorer functioning. ConHD children, aged 8–11 years, obtained lower mean scores on 5 of the 7 TACQOL scales than reference peers. They also had a lower score on positive emotional functioning than 12- to 15-year-old ConHD children. The total sample of ConHD children obtained lower outcomes compared to their parents on 4 of the 7 TACQOL scales. No significant differences were found in health-related quality of life between ConHD boys and girls, neither between different diagnostic groups. Overall, this sample of recently treated ConHD children showed a worse health-related quality of life compared to reference groups. These findings deserve further attention.

Keywords

Children Congenital heart disease Parents Psychology Quality of life 

Abbreviations

(ASD)

Atrial Septal Defect

(ConHD)

Congenital Heart Disease

(HRQol)

Health-related Quality of Life

(PS)

Pulmonary Stenosis

(TACQOL)

TNO-AZL Child Quality of Life Questionnaire

(TGA)

Transposition of the Great Arteries

(VSD)

Ventricular Septal Defect

This is a preview of subscription content, log in to check access.

Preview

Unable to display preview. Download preview PDF.

Unable to display preview. Download preview PDF.

References

  1. 1.
    Boneva, RS, Botto, LD, Moore, CA,  et al. 2001Mortality associated with congenital heart defects in the United StatesCirculation10323762381PubMedGoogle Scholar
  2. 2.
    Gatzoulis, MA, Freeman, MA, Siu, SC,  et al. 1999Atrial arrhythmia after surgical closure of atrial septal defects in adultsN Engl J Med340839846CrossRefPubMedGoogle Scholar
  3. 3.
    Gatzoulis, MA, Balaji, S, Webber, SA,  et al. 2000Risk factors for arrhythmia and sudden cardiac death late after repair of tetralogy of FallotLancet356975981CrossRefPubMedGoogle Scholar
  4. 4.
    Meijboom, FJ, Szatmari, A, Utens, E,  et al. 1994Long-term follow-up after surgical closure of ventricular septal defect in infancy and childhoodJ Am Coll Card2413581364CrossRefGoogle Scholar
  5. 5.
    Meijboom, FJ, Szatmari, A, Deckers, JW,  et al. 1996Long-term follow-up (10 to 17 years) after Mustard repair for transplantation of the great arteriesJ Thorac Cardiovasc Surg11111581168CrossRefPubMedGoogle Scholar
  6. 6.
    Mair, DD, Puga, FJ, Danielson, GK 2001The Fontan procedure for tricuspid atresia: early and late results of a 25 year experience with 216 patientsJ Am Coll Cardiol37933939CrossRefPubMedGoogle Scholar
  7. 7.
    World Health Organization1948Constitution of the World Health OrganizationWorld Health OrganizationGenevaGoogle Scholar
  8. 8.
    Vogels, T, Verrips, GHW, Koopman, HM,  et al. 2000TACQOL Manual Parent Form and Child FormLUMC-TNOLeidenGoogle Scholar
  9. 9.
    Uzark, K, Jones, K, Burwinkle, TM, Varni, JW 2003The Pediatric Quality of Life Inventory in children with heart diseaseProg Pediatr Cardiol18141148CrossRefGoogle Scholar
  10. 10.
    Culbert, EL, Ashburn, DA, Cullen-Dean, G,  et al. 2003Quality of Life of children after repair of transposition of the great arteriesCirculation108857862CrossRefPubMedGoogle Scholar
  11. 11.
    Dunbar-Masterson, C, Wypij, D, Bellinger, DC,  et al. 2001General health status of children with D-transposition of the great arteries after the arterial switch operationCirculation104I-138I-142Google Scholar
  12. 12.
    Kendall, L, Lewin, RJP, Parsons, JM,  et al. 2001Factors associated with self-perceived state of health in adolescents with congenital cardiac disease attending paediatric cardiological clinicsCardiol Young11431438PubMedGoogle Scholar
  13. 13.
    Verrips, GH, Vogels, TGC, Koopman, HM,  et al. 1999Measuring health-related quality of life in a child populationEur J Public Health9188193CrossRefGoogle Scholar
  14. 14.
    Cohen, JB 1988Statistical Power Analysis for the Behavioral Sciences2Lawrence Erlbaum AssociatesHillsdaleGoogle Scholar
  15. 15.
    Sticker, EJ 2004Sport macht stark – auch bei angeborenem HerzfehlerShaker VerlagAachenGoogle Scholar
  16. 16.
    Bellinger, DC, Wypij, D, Kuban, KCK,  et al. 1999Developmental and neurological status of children at 4 years of age after heart surgery with hypothermic circulatory arrest or low-flow cardiopulmonary bypassCirculation100526532PubMedGoogle Scholar
  17. 17.
    Bellinger, DC, Wypij, D, DuPlessis, AJ,  et al. 2003Neurodevelopmental status at eight years in children with dextro-transposition of the great arteries: The Boston Circulatory Arrest TrialJ Thorac Cardiovasc Surg12613851396CrossRefPubMedGoogle Scholar
  18. 18.
    Wernovsky, G, Stiles, KM, Gauvreau, K,  et al. 2000Cognitive development after the Fontan operationCirculation102883889PubMedGoogle Scholar
  19. 19.
    Mahle, WT 2001Neurological and cognitive outcomes in children with congenital heart diseaseCurr Opin Pediatr13482486CrossRefPubMedGoogle Scholar
  20. 20.
    Mahle, WT, Clancy, RR, Moss, EM,  et al. 2000Neurodevelopmental outcome and lifestyle assessment in school-aged and adolescent children with Hypoplastic Left Heart SyndromePediatrics10510821089CrossRefPubMedGoogle Scholar
  21. 21.
    Visconti, KJ, Bichell, DP, Jonas, RA,  et al. 1999Developmental outcome after surgical versus interventional closure of secundum atrial septal defect in childrenCirculation100II-145II-150Google Scholar
  22. 22.
    Oates, RK, Simpson, JM, Turnbull, JAB, Cartmill, TB 1995The relationship between intelligence and duration of circulatory arrest with deep hypothermiaJ Thorac Cardiovasc Surg110786792CrossRefPubMedGoogle Scholar
  23. 23.
    Theunissen, NCM, Vogels, TGC, Koopman, HM,  et al. 1998The proxy problem: child report versus parent report in health-related quality of life researchQual Life Res7387397CrossRefPubMedGoogle Scholar
  24. 24.
    Utens, EMWJ, Verhulst, FC, Meijboom, FJ,  et al. 1993Behavioral and emotional problems in children and adolescents with congenital heart diseasePsychol Med23415424PubMedCrossRefGoogle Scholar
  25. 25.
    Verrips, GH, Vogels, AGC, Den Ouden, AL,  et al. 2000Measuring health-related quality of life in adolescents: agreement between raters and between methods of administrationChild: Care, Health and Development26457469CrossRefGoogle Scholar

Copyright information

© Springer 2006

Authors and Affiliations

  • A. W. Spijkerboer
    • 1
    • 2
  • E. M. W. J. Utens
    • 1
  • W. B. De Koning
    • 2
  • A. J. J. C. Bogers
    • 3
  • W. A. Helbing
    • 2
  • F. C. Verhulst
    • 1
  1. 1.Department of Child & Adolescent PsychiatryErasmus Medical Centre – Sophia Children’s HospitalRotterdamThe Netherlands
  2. 2.Department of Paediatric CardiologyErasmus Medical CentreRotterdamThe Netherlands
  3. 3.Department of Cardiothoracic SurgeryErasmus Medical CentreRotterdamThe Netherlands

Personalised recommendations