Hostname: page-component-586b7cd67f-gb8f7 Total loading time: 0 Render date: 2024-11-24T04:07:49.922Z Has data issue: false hasContentIssue false

Quality of life of Malaysian children with CHD

Published online by Cambridge University Press:  06 March 2017

Lai C. Ong*
Affiliation:
Department of Paediatrics, Faculty of Medicine, University of Malaya, 50603 Kuala Lumpur, Malaysia
Ching S. Teh
Affiliation:
Department of Paediatrics, Faculty of Medicine, University of Malaya, 50603 Kuala Lumpur, Malaysia
Joyce Darshinee
Affiliation:
Department of Paediatrics, Faculty of Medicine, University of Malaya, 50603 Kuala Lumpur, Malaysia
Asma Omar
Affiliation:
Department of Paediatrics, Faculty of Medicine, University of Malaya, 50603 Kuala Lumpur, Malaysia
Hak L. Ang
Affiliation:
Department of Paediatrics, Faculty of Medicine, University of Malaya, 50603 Kuala Lumpur, Malaysia
*
Correspondence to: Professor Dr L. C. Ong, Department of Paediatrics, Faculty of Medicine, University of Malaya, 50603 Kuala Lumpur, Malaysia. Tel: +60 37 949 2056; Fax: +60 37 949 4704; E-mail: [email protected]

Abstract

Objectives

The objectives of this study were to compare the quality-of-life scores of Malaysian children with CHD and their healthy siblings, to determine the level of agreement between proxy-reports and child self-reports, and to examine variables that have an impact on quality of life in those with CHD.

Methods

Parental-proxy scores of the Pediatric Quality of Life Inventory 4.0 core scales were obtained for 179 children with CHD and 172 siblings. Intra-class coefficients were derived to determine the levels of proxy–child agreement in 66 children aged 8–18 years. Multiple regression analysis was used to determine factors that impacted Pediatric Quality of Life Inventory scores.

Results

Proxy scores were lower in children with CHD than siblings for all scales except physical health. Maximum differences were noted in children aged 5–7 years, whereas there were no significant differences in the 2–4 and 13–18 years age groups. Good levels of proxy–child agreement were found in children aged 8–12 years for total, psychosocial health, social, and school functioning scales (correlation coefficients 0.7–0.8). In children aged 13–18 years, the level of agreement was poor to fair for emotional and social functioning. The need for future surgery and severity of symptoms were associated with lower scores.

Conclusion

Differences in proxy perception of quality of life appear to be age related. The level of proxy–child agreement was higher compared with other reported studies, with lower levels of agreement in teenagers. Facilitating access to surgery and optimising control of symptoms may improve quality of life in this group of children.

Type
Original Articles
Copyright
© Cambridge University Press 2017 

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. 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: 11431172.Google Scholar
2. Drakouli, M, Petsios, K, Giannakopoulou, M, Patiraki, E, Voutoufianaki, I, Matziou, V. Determinants of quality of life in children and adolescents with CHD: a systematic review. Cardiol Young 2015; 25: 10271036.Google Scholar
3. Wang, X. Health-related quality of life in adolescents with congenital heart disease: importance of parental hope. Iran J Public Health 2014; 43: 849850.Google Scholar
4. Varni, JW, Seid, M, Kurtin, PS. Pediatric quality of life inventory 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: 800812.Google Scholar
5. Boey, CC, Omar A, Arul Phillips, J. Correlation among academic performance, recurrent abdominal pain and other factors in year 6 urban primary school children in Malaysia. J Paediatr Child Health 2003; 39: 352357.Google Scholar
6. Warnes, CA, Williams, RG, Bashore, TM, et al. ACC/AHA 2008 guidelines for the management of adults with congenital heart disease: a report of the American College of Cardiology/American Heart Association Task Force on Practice Guidelines. J Am Coll Cardiol 2008; 52: 143263.Google Scholar
7. Ross, RD, Daniels SR, Schwartz, DC, Hannon, DW, Shukla, R, Kaplan, S. Plasma levels of norepinephrine in infants and children with congestive heart failure. Am J Cardiol 1987; 59: 911914.Google Scholar
8. Bartko, JJ. The intraclass correlation coefficient as a measure of reliability. Psychol Rep 1966; 19: 311.Google Scholar
9. Mellion, K, Uzark, K, Cassedy, A, et al. Health-related quality of life outcomes in children and adolescents with congenital heart disease. J Pediatr 2014; 164: 781788.Google Scholar
10. Berkes, A, Varni, JW, Pataki, I, Kardos, L, Kemény, C, Mogyorósy, G. Measuring health-related quality of life in Hungarian children attending a cardiology clinic with the Pediatric Quality of Life Inventory™. Eur J Pediatr 2010; 169: 333347.Google Scholar
11. Krol, Y, Grootenhuis, MA, DestrÉe-Vonk, A, Lubbers, LJ, Koopman, HM, Last, BF. Health related quality of life in children with congenital heart disease. Psychol Health 2003; 18: 251260.CrossRefGoogle Scholar
12. Mussatto, K, Tweddell, J. Quality of life following surgery for congenital cardiac malformations in neonates and infants. Cardiol Young 2005; 15 (Suppl 1): 174178.Google Scholar
13. Spijkerboer, A, Utens, E, De Koning, W, Bogers, A, Helbing, W, Verhulst, F. Health-related quality of life in children and adolescents after invasive treatment for congenital heart disease. Qual Life Res 2006; 15: 663673.Google Scholar
14. Knowles, RL, Day, T, Wade, A, Bull, C, Wren, C, Dezateux, C. Patient-reported quality of life outcomes for children with serious congenital heart defects. Arch Dis Child 2014; 99: 413419.Google Scholar
15. Landolt, MA, Buechel, ERV, Latal, B. Health-related quality of life in children and adolescents after open-heart surgery. J Pediatr 2008; 152: 349355.Google Scholar
16. Amedro, P, Dorka, R, Moniotte, S, et al. Quality of life of children with congenital heart diseases: a multicenter controlled cross-sectional study. Pediatr Cardiol 2015; 36: 15881601.Google Scholar
17. Guerra, GG, Robertson, CMT, Alton, GY, et al. Quality of life 4 years after complex heart surgery in infancy. J Thorac Cardiovasc Surg 2013; 145: 482488.Google Scholar
18. 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: 10601067.Google Scholar
19. Walker, R, Gauvreau, K, Jenkins, K. Health-related quality of life in children attending a cardiology clinic. Pediatr Cardiol 2004; 25: 4048.Google Scholar
20. Larsen, SH, McCrindle, BW, Jacobsen, EB, Johnsen, SP, Emmertsen, K, Hjortdal, VE. Functional health status in children following surgery for congenital heart disease: a population-based cohort study. Cardiol Young 2010; 20: 631640.Google Scholar
21. Areias, MEG, Pinto, CI, Vieira, PF, et al. Long term psychosocial outcomes of congenital heart disease (CHD) in adolescents and young adults. Transl Pediatr 2013; 2: 9098.Google Scholar
22. Apers, S, Kovacs, AH, Luyckx, K, et al. Quality of life of adults with congenital heart disease in 15 countries: evaluating country-specific characteristics. J Am Coll Cardiol 2016; 67: 22372245.Google Scholar
23. Cohen, M, Mansoor, D, Langut, H, Lorber, A. Quality of life, depressed mood, and self-esteem in adolescents with heart disease. Psychosom Med 2007; 69: 313318.Google Scholar
24. Goldbeck, L, Melches, J. The impact of the severity of disease and social disadvantage on quality of life in families with congenital cardiac disease. Cardiol Young 2006; 16: 6775.Google Scholar
25. Wray, J, Franklin, R, Brown, K, Cassedy, A, Marino, BS. Testing the pediatric cardiac quality of life inventory in the United Kingdom. Acta Paediatr 2013; 102: e68e73.Google Scholar
26. Eagleson, KJ, Justo, RN, Ware, RS, Johnson, SG, Boyle, FM. Health‐related quality of life and congenital heart disease in Australia. J Paediatr Child Health 2013; 49: 856864.Google Scholar
27. Dean, PN, Gillespie, CW, Greene, EA, et al. Sports participation and quality of life in adolescents and young adults with congenital heart disease. Congenit Heart Dis 2015; 10: 169179.Google Scholar
28. Bertoletti, J, Marx, GC, Hattge, SP Jr, Pellanda, LC. Health-related quality of life in adolescents with congenital heart disease. Cardiol Young 2015; 25: 526532.Google Scholar
29. Luyckx, K, Missotten, L, Goossens, E, et al. Individual and contextual determinants of quality of life in adolescents with congenital heart disease. J Adolesc Health 2012; 51: 122128.Google Scholar
30. Luyckx, K, Goossens, E, Rassart, J, Apers, S, Vanhalst, J, Moons, P. Parental support, internalizing symptoms, perceived health status, and quality of life in adolescents with congenital heart disease: influences and reciprocal effects. J Behav Med 2014; 37: 145155.Google Scholar