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

Overview

Journal Qual Life Res

Specialties Pharmacology
Rehabilitation Medicine

Date 2006 May 12

PMID 16688499

Citations 22

Authors

A W Spijkerboer

E M W J Utens

W B De Koning

A J J C Bogers

W A Helbing

F C Verhulst

Affiliations

Soon will be listed here.

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.

Citing Articles

Evaluation of Oral Health Status and Treatment Needs of Children with Congenital and Acquired Heart Disease.

Tasdemir T, Erbas Unverdi G, Ballikaya E, Aypar E, Aykan H, Karagoz T J Clin Med. 2024; 13(14).

PMID: 39064100 PMC: 11278448. DOI: 10.3390/jcm13144060.

Effects of minimally invasive and traditional surgeries on the quality of life of children with congenital heart disease: a retrospective propensity score-matched study.

Tan H, Huang E, Deng X, Li D, Ouyang S BMC Pediatr. 2021; 21(1):522.

PMID: 34819045 PMC: 8611858. DOI: 10.1186/s12887-021-02978-5.

Growth and development of children under 5 years of age with tetralogy of Fallot in a Chinese population.

Li X, Zhu J, An J, Wang Y, Wu Y, Li X Sci Rep. 2021; 11(1):14255.

PMID: 34244570 PMC: 8271005. DOI: 10.1038/s41598-021-93726-3.

Quality of life and health status of hospitalized adults with congenital heart disease in Vietnam: a cross-sectional study.

Truong T, Kim N, Nguyen M, Do D, Nguyen H, Le T BMC Cardiovasc Disord. 2021; 21(1):229.

PMID: 33947343 PMC: 8097946. DOI: 10.1186/s12872-021-02026-1.

Early Evaluation and the Effect of Socioeconomic Factors on Neurodevelopment in Infants with Tetralogy of Fallot.

Favilla E, Faerber J, Hampton L, Tam V, DeCost G, Ravishankar C Pediatr Cardiol. 2021; 42(3):643-653.

PMID: 33533966 PMC: 7990815. DOI: 10.1007/s00246-020-02525-6.

References

Visconti K, Bichell D, Jonas R, Newburger J, Bellinger D . Developmental outcome after surgical versus interventional closure of secundum atrial septal defect in children. Circulation. 1999; 100(19 Suppl):II145-50. DOI: 10.1161/01.cir.100.suppl_2.ii-145. View

Meijboom F, Szatmari A, Deckers J, Utens E, Roelandt J, Bos E . Long-term follow-up (10 to 17 years) after Mustard repair for transposition of the great arteries. J Thorac Cardiovasc Surg. 1996; 111(6):1158-68. DOI: 10.1016/s0022-5223(96)70217-9. View

Mahle W . Neurologic and cognitive outcomes in children with congenital heart disease. Curr Opin Pediatr. 2002; 13(5):482-6. DOI: 10.1097/00008480-200110000-00016. View

Utens E, Verhulst F, Meijboom F, Duivenvoorden H, Erdman R, Bos E . Behavioural and emotional problems in children and adolescents with congenital heart disease. Psychol Med. 1993; 23(2):415-24. DOI: 10.1017/s0033291700028518. View

Verrips G, Vogels A, den Ouden A, Paneth N, Verloove-Vanhorick S . Measuring health-related quality of life in adolescents: agreement between raters and between methods of administration. Child Care Health Dev. 2000; 26(6):457-69. DOI: 10.1046/j.1365-2214.2000.00181.x. View

Oates R, Simpson J, TURNBULL J, CARTMILL T . The relationship between intelligence and duration of circulatory arrest with deep hypothermia. J Thorac Cardiovasc Surg. 1995; 110(3):786-92. DOI: 10.1016/S0022-5223(95)70112-5. View

Culbert E, Ashburn D, Cullen-Dean G, Joseph J, Williams W, Blackstone E . Quality of life of children after repair of transposition of the great arteries. Circulation. 2003; 108(7):857-62. DOI: 10.1161/01.CIR.0000084547.93252.9A. View

Mair D, Puga F, Danielson G . The Fontan procedure for tricuspid atresia: early and late results of a 25-year experience with 216 patients. J Am Coll Cardiol. 2001; 37(3):933-9. DOI: 10.1016/s0735-1097(00)01164-5. View

Boneva R, Botto L, Moore C, Yang Q, Correa A, Erickson J . Mortality associated with congenital heart defects in the United States: trends and racial disparities, 1979-1997. Circulation. 2001; 103(19):2376-81. DOI: 10.1161/01.cir.103.19.2376. View

10.

Gatzoulis M, Freeman M, Siu S, Webb G, Harris L . Atrial arrhythmia after surgical closure of atrial septal defects in adults. N Engl J Med. 1999; 340(11):839-46. DOI: 10.1056/NEJM199903183401103. View

11.

Bellinger D, Wypij D, duPlessis A, Rappaport L, Jonas R, Wernovsky G . Neurodevelopmental status at eight years in children with dextro-transposition of the great arteries: the Boston Circulatory Arrest Trial. J Thorac Cardiovasc Surg. 2003; 126(5):1385-96. DOI: 10.1016/s0022-5223(03)00711-6. View

12.

Wypij D, Bellinger D, Rappaport L, Baker A, Jonas R, Newburger J . General health status of children with D-transposition of the great arteries after the arterial switch operation. Circulation. 2001; 104(12 Suppl 1):I138-42. DOI: 10.1161/hc37t1.094782. View

13.

Theunissen N, Vogels T, Koopman H, Verrips G, Zwinderman K, Verloove-Vanhorick S . The proxy problem: child report versus parent report in health-related quality of life research. Qual Life Res. 1998; 7(5):387-97. DOI: 10.1023/a:1008801802877. View

14.

Meijboom F, Szatmari A, Utens E, Deckers J, Roelandt J, Bos E . Long-term follow-up after surgical closure of ventricular septal defect in infancy and childhood. J Am Coll Cardiol. 1994; 24(5):1358-64. DOI: 10.1016/0735-1097(94)90120-1. View

15.

Gatzoulis M, Balaji S, Webber S, Siu S, Hokanson J, Poile C . Risk factors for arrhythmia and sudden cardiac death late after repair of tetralogy of Fallot: a multicentre study. Lancet. 2000; 356(9234):975-81. DOI: 10.1016/S0140-6736(00)02714-8. View

16.

Mahle W, Clancy R, MOSS E, Gerdes M, Jobes D, Wernovsky G . Neurodevelopmental outcome and lifestyle assessment in school-aged and adolescent children with hypoplastic left heart syndrome. Pediatrics. 2000; 105(5):1082-9. DOI: 10.1542/peds.105.5.1082. View

17.

Kendall L, Lewin R, Parsons J, Veldtman G, Quirk J, Hardman G . Factors associated with self-perceived state of health in adolescents with congenital cardiac disease attending paediatric cardiologic clinics. Cardiol Young. 2001; 11(4):431-8. DOI: 10.1017/s1047951101000555. View

18.

Wernovsky G, Stiles K, Gauvreau K, Gentles T, Duplessis A, Bellinger D . Cognitive development after the Fontan operation. Circulation. 2000; 102(8):883-9. DOI: 10.1161/01.cir.102.8.883. View

19.

Bellinger D, Wypij D, Kuban K, Rappaport L, Hickey P, Wernovsky G . Developmental and neurological status of children at 4 years of age after heart surgery with hypothermic circulatory arrest or low-flow cardiopulmonary bypass. Circulation. 1999; 100(5):526-32. DOI: 10.1161/01.cir.100.5.526. View