Hostname: page-component-78c5997874-t5tsf Total loading time: 0 Render date: 2024-11-15T21:16:55.952Z Has data issue: false hasContentIssue false
  • English
  • Français

Health-related quality of life in children with surgery for CHD: a study from the Swedish National Registry for Congenital Heart Disease

Published online by Cambridge University Press:  26 May 2016

Birgitta Svensson ,
Ewa Idvall ,
Fredrik Nilsson  and
Petru Liuba
Birgitta Svensson*
Affiliation:
Department of Cardiology, Pediatric Heart Center, Skåne University Hospital, Lund, Sweden
Ewa Idvall
Affiliation:
Department of Care and Science, Faculty of Health and Society, Malmö University, Malmö, Sweden
Fredrik Nilsson
Affiliation:
Research and Development Centre, Medical Statistics and Epidemiology, Skåne University Hospital, Lund, Sweden
Petru Liuba
Affiliation:
Department of Cardiology, Pediatric Heart Center, Skåne University Hospital, Lund, Sweden
*
Correspondence to: B. Svensson, Registered Nurse, MSc in Nursing, Pediatric Heart Center, Skåne University Hospital Lund, 22185 Lund, Sweden, Lund University, Box 117, 22100 Lund, Sweden. Tel: +46 46 17 81 53; Fax: +46 46 17 81 50; E-mail: [email protected]
Get access Rights & Permissions [Opens in a new window]

Abstract

Background

As survival of children with CHD needing surgery has improved significantly, the need for follow-up in terms of health-related quality of life has become increasingly important. In this study, we sought to describe health-related quality of life in children with CHD in relation to cardiac surgery.

Methods

A retrospective Swedish National Registry for Congenital Heart Disease survey measured using DISABKIDS chronic generic measure-short version included 337 children (age 9–17 years; 39% girls). The majority (n=319, 95%) of children had a biventricular heart, whereas the remaining had a univentricular heart. Cardiac surgery was performed in 197 (58%) children. Health-related quality of life was expressed as total score (100 highest) and given as medians and 10–90th percentiles.

Results

The overall total score was 95 (88–100). Children with a biventricular heart who had undergone three or more surgeries (n=31; 9%) had the lowest total score of 81 (61–97; p<0.001). Children with two or more surgeries and those with univentricular heart were classified in NYHA II more frequently than children with one or no cardiac surgery (p=0.005 and <0.001, respectively). Children with three or more surgeries and those with univentricular heart needed more help at school (p<0.001). Compared with children with other chronic diseases, children with CHD had a high total score except for children with three or more surgeries who had comparable total scores with children with other chronic diseases.

Conclusion

Children with three or more cardiac surgeries and those with a univentricular heart appear to have lower health-related quality of life, cognitive ability, and NYHA classification.

Keywords

Health-related quality of lifeCHDchildrenregistry study
Type
Original Articles
Information
Cardiology in the Young , Volume 27 , Issue 2 , March 2017 , pp. 333 - 343
Check for updates
Copyright
© Cambridge University Press 2016 

Access options

Get access to the full version of this content by using one of the access options below. (Log in options will check for institutional or personal access. Content may require purchase if you do not have access.)

References

1. About Swedcon: Swedish National Registry for Congenital Heart Disease 2015, Retrieved November 2015 from http://www.ucr.uu.se/swedcon.Google Scholar
2. Bullinger, M, Schmidt, S, Petersen, C, The DISABKIDS group. Assessing quality of life of children with chronic health conditions and disabilities: a European approach. Int J Rehabil Res 2002; 25: 197–206.Google Scholar
3. Bratt, EL, Moons, P. Forty years of quality-of-life research in congenital heart disease: temporal trends in conceptual and methodological rigor. Int J Cardiol 2015; 195: 1–6.Google Scholar
4. Costello, JM, Mussatto, K, Cassedy, A, et al. Prediction by clinicians of quality of life for children and adolescents with cardiac disease. J Pediatr 2015; 166: 679–683.Google Scholar
5. Kwon, EN, Mussatto, K, Simpson, PM, Brosig, CB, Nugent, M, Samyn, MM. Children and adolescents with repaired tetralogy of Fallot report quality of life similar to healthy peers. Congenit Heart Dis 2011; 6: 18–27.Google Scholar
6. Mussatto, K, Twedell, J. Quality of life following surgery for congenital cardiac malformations in neonates and infants. Cardiol Young 2005; 15: 174–178.Google Scholar
7. Uzark, K, Jones, K, Slusher, J, Limbers, CA, Burwinkle, TM, Varni, JW. Quality of life in children with heart disease as perceived by children and parents. Pediatrics 2008; 121: e1060–e1067.Google Scholar
8. Marino, BS, Tomlinson, RS, Wernovsky, G, et al. Validation of the pediatric cardiac quality of life inventory. Pediatrics. 2010; 126: 498–508.Google Scholar
9. Latal, B, Helfricht, S, Fischer, JE, Bauersfeld, U, Landolt, MA. 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. doi:10.1186/1471-2431-9-6.Google Scholar
10. Eagleson, KJ, Justo, RN, Ware, RS, Johnson, SG, Boyle, FM. Health-related quality of life and congenital heart disease in Australia. J Pediatr Child Health 2013; 43: 856–864.Google Scholar
11. Sand, P, Kljajic, M, Sunnegårdh, J. The reliability of the pediatric quality of life inventory 3.0 cardiac module for Swedish children with congenital heart defects. Nord Psychol 2013; 9: 1–14.Google Scholar
12. Chaplin, JE, Hanas, R, Lind, A, Tollig, H, Wrammer, N, Lindblad, B. Assessment of childhood diabetes – related quality-of-life in West Sweden. Acta Paediatr 2009; 98: 361–366.Google Scholar
13. Sandeberg, M, Johansson, E, Björk, O, Wettergren, L. Health-related quality of life relates to school attendance in children on treatment for cancer. J Pediatr Oncol Nurs 2008; 25: 265–274.Google Scholar
14. Janssens, L, Gorter, JW, Ketalaar, M, Holtslag, HR. Health-related quality-of-life measures for long-term follow-up in children after major trauma. Qual Life Res 2008; 17: 701–713.Google Scholar
15. The European DISABKIDS Group. The DISABKIDS Questionnaires Quality of Life Questionnaires for Children with Chronic Conditions-Handbook. Pabst Science Publishers, Lengerich, Germany, 2006.Google Scholar
16. The Criteria Committee for the New York Heart Association. Nomenclature and Criteria for Diagnosis of Diseases of the Heart and Great Vessels, 9th ed. Little Brown and Company, Boston, Massachusetts, 1994: 253–255.Google Scholar
17. Birkeland, A, Rydberg, A, Hägglöf, B. The complexity of the psychosocial situation in children and adolescents with heart disease. Acta Pædiatr 2005; 94: 1495–1501.Google Scholar
18. R Core Team 2014, R: a language and environment for statistical computing. R Foundation for Statistical Computing, Vienna. Retrieved November 2015 from http://www.R-project.org/.Google Scholar
19. Tahirović, E, Begić, H, Nurkić, M, Tahirović, H, Varni, JW. Does the severity of congenital heart defects affect disease-specific health-related quality of life in children in Bosnia and Herzegovina? Eur J Pediatr 2010; 169: 349–353.Google Scholar
20. Ternestedt, BM, Wall, K, Oddsson, H, Riesenfield, T, Groth, I, Schollin, J. Quality of life 20 and 30 years after surgery in patients operated on for tetralogy of Fallot and for atrial septal defect. Pediatr Cardiol 2001; 22: 128–132.Google Scholar
21. Davis, E, Waters, E, Mackinnon, A, et al. Paediatric quality of life instruments: a review of the impact of the conceptual framework on outcomes. Dev Med Child Neurol 2006; 48: 311–318.Google Scholar
22. Berghammer, M, Karlsson, J, Ekman, I, Eriksson, P, Dellborg, M. Self-reported health status (EQ-5D) in adults with congenital heart disease. Int J. Cardiol 2013; 165: 537–543.Google Scholar
23. 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.Google Scholar
24. Mueller, GC, Sarikouch, S, Beerbaum, P, et al. Health-related quality of life compared with cardiopulmonary exercise testing at the midterm follow-up visit after tetralogy of Fallot repair: a study of the German competence network for congenital heart defects. Pediatr Cardiol 2013; 34: 1081–1087.Google Scholar