Skip to main content

Advertisement

SpringerLink
Log in

Does the severity of congenital heart defects affect disease-specific health-related quality of life in children in Bosnia and Herzegovina?

  • Original Paper
  • Published:
European Journal of Pediatrics Aims and scope Submit manuscript

Abstract

The aim of this study was to assess whether the severity of congenital heart defects (CHD) affects disease-specific health-related quality of life (HRQOL) in children after open heart surgery. One hundred and fourteen children with CHD and one of their parents participated in the study. HRQOL was evaluated by the PedsQL™ 3.0 Cardiac Module. The children were assigned to one of three groups according to severity of CHD. Children with cyanotic CHD (Group 3) reported that their HRQOL on several domains was lower than that of children with anomalies with the left–right shunt and children with obstructive anomalies. Also, by parent proxy-report, patients with anomalies with the left–right shunt had statistically significant, better HRQOL scores for the heart problems and treatment scales, perceived physical appearance, treatment anxiety, cognitive problems, and communication scales in comparison to the children with cyanotic CHD. By self-report, children of Group 1 reported that they had statistically significant, better HRQOL in the heart problems and treatment scales compared with Group 2. Conclusions: The results of the assessment by the PedsQL™ 3.0 Cardiac Module, a cardiac disease-specific instrument for children with CHD, indicate that HRQOL is poorest in children with complex CHD. Therefore, it is necessary to take the appropriate preventive measures for these patients, which include early (timely) cardiosurgical intervention and active psychological support to limit the negative impact of serious forms of CHD on the quality of life of these children.

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

Access this article

Log in via an institution

Price excludes VAT (USA)
Tax calculation will be finalised during checkout.

Instant access to the full article PDF.

Institutional subscriptions

Similar content being viewed by others

References

  1. Heimansohn DA, Turrentine MW, Kesler KA et al (1993) New trends in the management of congenital heart disease. World J Surg 17:356–362

    Article  CAS  PubMed  Google Scholar 

  2. Daliento L, Mapelli D, Volpe B (2006) Measurement of cognitive outcome and quality of life in congenital heart disease. Heart 92:569–574

    Article  PubMed  Google Scholar 

  3. Moons P, Van Deyk K, De Geest S et al (2005) Is the severity of congenital heart disease associated with the quality of life and perceived health of adult patients? Heart 91:1193–1198

    Article  CAS  PubMed  Google Scholar 

  4. DeMaso DR, Campis LK, Wypij D et al (1991) The impact of maternal perceptions and medical severity on the adjustment of children with congenital heart disease. J Pediatr Psychol 16:137–149

    Article  CAS  PubMed  Google Scholar 

  5. Krol Y, Grotenhuis M, Destree-Vonk A et al (2003) Health related quality of life in children with congenital heart disease. Psychology Health 18:251–260

    Article  Google Scholar 

  6. Goldbeck L, Melches J (2006) The impact of the severity of disease and social disadvantage on quality of life in families with congenital cardiac disease. Cardiol Young 16:67–75

    Article  PubMed  Google Scholar 

  7. Uzark K, Jones K, Slusher J et al (2008) Quality of life in children with heart disease as perceived by children and parents. Pediatrics 121(5):e1060–e1067

    Article  PubMed  Google Scholar 

  8. Spurkland I, Bjørnstad PG, Lindberg H et al (1993) Mental health and psychosocial functioning in adolescents with congenital heart disease. A comparison between adolescents born with severe heart defect and atrial septal defect. Acta Paediatr 82:71–76

    Article  CAS  PubMed  Google Scholar 

  9. Cohen M, Mansoor D, Langut H et al (2007) Quality of life, depressed mood, and self-esteem in adolescents with heart disease. Psychosom Med 69:313–318

    Article  PubMed  Google Scholar 

  10. Federal office of statistics (2007) Statistical data on economic and other trends. Federal office of statistics, Sarajevo

    Google Scholar 

  11. Uzark K, Jones K, Burwinkle TM et al (2003) The pediatric quality of life inventory(TM) in children with heart disease. Prog Pediatr Cardiol 18:141–148

    Article  Google Scholar 

  12. Varni JW (2007) Scaling and scoring of the Pediatric Quality of Life Inventory™ (PedsQL™), Mapi Research Trust, Lyon. www.pedsql.org

  13. Buchan IE (1997) Arcus QuickStat Biomedical version, 1st edn. Adisson Wesley Longman Ltd., Cambridge

    Google Scholar 

  14. Menahem S, Poulakis Z, Prior M (2007) Children subjected to cardiac surgery for congenital heart disease. Part 1—emotional and psychological outcomes. Interact Cardiovasc Thorac Surg 7:600–604

    Article  Google Scholar 

  15. Menahem S, Poulakis Z, Prior M (2008) Children subjected to cardiac surgery for congenital heart disease. Part 2—parental emotional experiences. Interact CardioVasc Thorac Surg 7:605–608

    Article  PubMed  Google Scholar 

Download references

Conflict of interests

The authors declare that they have no conflict of interest. This study was not sponsored by any external organization.

Author information

Authors and Affiliations

  1. Heart Center Sarajevo, Clinical Center, University of Sarajevo, Sarajevo, Bosnia and Herzegovina

    Elnur Tahirović

  2. Department of Paediatrics, University Clinical Centre Tuzla, Tuzla, Bosnia and Herzegovina

    Hidajeta Begić & Husref Tahirović

  3. Cardiovascular Clinic, University Clinical Center Tuzla, Tuzla, Bosnia and Herzegovina

    Midhat Nurkić

  4. Department of Pediatrics, College of Medicine, Texas A&M University, College Station, TX, USA

    James W. Varni

  5. Department of Landscape Architecture and Urban Planning, College of Architecture, Texas A&M University, College Station, TX, USA

    James W. Varni

Authors
  1. Elnur Tahirović
    View author publications

    You can also search for this author in PubMed Google Scholar

  2. Hidajeta Begić
    View author publications

    You can also search for this author in PubMed Google Scholar

  3. Midhat Nurkić
    View author publications

    You can also search for this author in PubMed Google Scholar

  4. Husref Tahirović
    View author publications

    You can also search for this author in PubMed Google Scholar

  5. James W. Varni
    View author publications

    You can also search for this author in PubMed Google Scholar

Corresponding author

Correspondence to Elnur Tahirović.

Rights and permissions

Reprints and permissions

About this article

Cite this article

Tahirović, E., Begić, H., Nurkić, M. et al. Does the severity of congenital heart defects affect disease-specific health-related quality of life in children in Bosnia and Herzegovina?. Eur J Pediatr 169, 349–353 (2010). https://doi.org/10.1007/s00431-009-1060-7

Download citation

  • Received:

  • Accepted:

  • Published:

  • Issue Date:

  • DOI: https://doi.org/10.1007/s00431-009-1060-7

Keywords

Search

Navigation