Hostname: page-component-cd9895bd7-fscjk Total loading time: 0 Render date: 2024-12-22T23:25:55.921Z Has data issue: false hasContentIssue false
  • English
  • Français

Health-related quality of life in adolescents with congenital heart disease

Published online by Cambridge University Press:  27 March 2014

Juliana Bertoletti ,
Giovana C. Marx ,
Sérgio P. Hattge Jr  and
Lúcia C. Pellanda
Juliana Bertoletti
Affiliation:
Department of Cardiology, Post-Graduation Program in Health Sciences, Instituto de Cardiologia/Fundação Universitária de Cardiologia, Porto Alegre, RS, Brazil
Giovana C. Marx
Affiliation:
Universidade Federal de Ciências da Saúde de Porto Alegre, UFCSPA, Porto Alegre, RS, Brazil
Sérgio P. Hattge Jr
Affiliation:
Universidade Federal de Ciências da Saúde de Porto Alegre, UFCSPA, Porto Alegre, RS, Brazil
Lúcia C. Pellanda*
Affiliation:
Department of Cardiology, Post-Graduation Program in Health Sciences, Instituto de Cardiologia/Fundação Universitária de Cardiologia, Porto Alegre, RS, Brazil Universidade Federal de Ciências da Saúde de Porto Alegre, UFCSPA, Porto Alegre, RS, Brazil
*
Correspondence to: Prof L. C. Pellanda, Av Princesa Isabel, 370, Santana, Porto Alegre, RS 90620-000, Brazil. Tel: +55 51 32303600; Fax:+55 51 32172035; E-mail: [email protected]
Get access Rights & Permissions [Opens in a new window]

Abstract

Purpose: This study aims to evaluate the health-related quality of life of adolescents with congenital heart disease, describing health-related quality of life according to the diagnosis and severity of congenital heart disease, identified by variables such as the presence of symptoms, surgical interventions, use of medication, and residual lesion. Methods: A cross-sectional study was conducted on 203 adolescents with congenital heart disease attended at the Pediatric Cardiology ambulatory of a reference hospital in Brazil. The Brazilian version of the questionnaire KIDSCREEN-27 was used for the assessment of health-related quality of life. Information related to the congenital heart disease diagnosis and clinical variables were collected from the medical records of the patients. Results: There was no statistically significant difference between acyanotic and cyanotic groups, as well as for the different diagnosis of congenital heart disease. A trend for better health-related quality of life in the dimension of Psychological Well-Being (p=0.054) was found in the groups with surgical intervention and use of medication. Adolescents that referred a good general health presented significantly better results in all dimensions of health-related quality of life, except for Autonomy and Parent Relation, than those who presented clinical symptoms (p<0.05). Conclusions: Type of congenital heart disease and initial diagnosis did not seem to affect the perception of health-related quality of life, corroborating findings of several studies. Surgical interventions and the use of medication can improve previous clinical status, and therefore it seems to be beneficial in terms of Psychological Well-Being. The presence of clinical symptoms was the variable that caused the largest impact on the perception of health-related quality of life, possibly because of the impairment they bring to the daily lives of these patients.

Keywords

Quality of lifeheart defectscongenitaladolescent
Type
Original Articles
Information
Cardiology in the Young , Volume 25 , Issue 3 , March 2015 , pp. 526 - 532
Copyright
© Cambridge University Press 2014 

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. Huber, J, Peres, VC, Santos, TJ, et al. Congenital heart diseases in a reference service: clinical evolution and associated illnesses. Arq Bras Cardiol 2010; 94: 313–318.Google Scholar
2. 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: 1143–1172.CrossRefGoogle ScholarPubMed
3. Wernovsky, G. Current insights regarding neurological and developmental abnormalities in children and young adults with complex congenital cardiac disease. Cardiol Young 2006; 16: 92–104.CrossRefGoogle Scholar
4. Shillingford, AJ, Glanzman, MM, Ittenbach, RF, et al. Inattention, hyperactivity, and school performance in a population of school-age children with complex congenital heart disease. Pediatrics 2008; 121: e759–e767.Google Scholar
5. Sable, C, Foster, E, Uzark, K, et al. Best practices in managing transition to adulthood for adolescents with congenital heart disease: the transition process and medical and psychosocial issues. Circulation 2011; 123: 1454–1485.CrossRefGoogle ScholarPubMed
6. Moons, P, Van Deyk, K, Budts, W, De Geest, S. Caliber of quality-of-life assessments in congenital heart disease: a plea for more conceptual and methodological rigor. Arch Pediatr Adolesc Med 2004; 158: 1062–1069.Google Scholar
7. Janiec, I, Werner, B, Sieminska, J, Ravens-Sieberer, U. Quality of life of children with mitral valve prolapse. Qual Life Res 2011; 20: 537–541.CrossRefGoogle ScholarPubMed
8. Krol, Y, Grootenhuis, MA, Destrée-Vonk, A, et al. Health related quality of life in children with congenital heart disease. Psychol Health 2003; 18: 251–260.CrossRefGoogle Scholar
9. 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: 1060–1067.Google Scholar
10. Landolt, M, Valsangiacomo Buechel, ER, Latal, B. Health-related quality of life in children and adolescents after open-heart surgery. J Pediatr 2008; 152: 349–355.Google Scholar
11. Spijkerboer, AW, Utens, EM, De Koning, WB, Bogers, AJ, Helbing, WA, Verhulst, FC. Health-related quality of life in children and adolescents after invasive treatment for congenital heart disease. Qual Life Res 2006; 15: 663–673.CrossRefGoogle ScholarPubMed
12. Tahirović, E, Begić, H, Tahirović, H, Varni, JW. Quality of life in children after cardiac surgery for congenital heart disease. Coll Antropol 2011; 35: 1285–1290.Google ScholarPubMed
13. Miatton, M, De Wolf, D, François, K, Thiery, E, Vingerhoets, G. Behavior and self-perception in children with a surgically corrected congenital heart disease. J Dev Behav Pediatr 2007; 28: 294–301.CrossRefGoogle ScholarPubMed
14. 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.Google Scholar
15. Teixeira, FM, Coelho, RM, Proença, C, et al. Quality of life experienced by adolescents and young adults with congenital heart disease. Pediatr Cardiol 2011; 32: 1132–1138.Google Scholar
16. Culbert, EL, Ashburn, DA, Cullen-Dean, G, et al. Quality of life of children after repair of transposition of the great arteries. Circulation 2003; 108: 857–862.CrossRefGoogle ScholarPubMed
17. Kwon, EN, Mussatto, K, Simpson, PM, Brosig, C, 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.CrossRefGoogle ScholarPubMed
18. Silva, AM, Vaz, C, Areias, ME, et al. Quality of life of patients with congenital heart diseases. Cardiol Young 2011; 21: 670–676.Google Scholar
19. de Onis, M, Onyango, AW, Borghi, E, Siyam, A, Nishida, C, Siekmann, J. Development of a WHO growth reference for school-aged children and adolescents. Bull World Health Organ 2007; 85: 660–667.CrossRefGoogle ScholarPubMed
20. Guedes, DP, Guedes, JERP. Translation, cross-cultural adaptation and psycometric properties of the KIDSCREEN-52 for the Brazilian population. Rev Paul Pediatr 2011; 29: 364–371.Google Scholar
21. Ravens-Sieberer, U, Gosch, A, Rajmil, L, et al. KIDSCREEN-52 quality-of-life measure for children and adolescents. Expert Rev Pharmacoecon Outcomes Res 2005; 5: 353–364.Google Scholar
22. Békési, A, Török, S, Kökönyei, G, et al. Health-related quality of life changes of children and adolescents with chronic disease after participation in therapeutic recreation camping program. Health Qual Life Outcomes 2011; 9: 43.Google Scholar
23. Mohler-Kuo, M, Dey, M. A comparison of health-related quality of life between children with versus without special health care needs, and children requiring versus not requiring psychiatric services – Springer. Qual Life Res 2012; 21: 1577–1586.Google Scholar
24. Weitkamp, K, Daniels, J, Rosenthal, S, Romer, G, Wiegand-Grefe, S. Health related quality of life: cross informant agreement of father, mother, and self report for children and adolescents in outpatient psychotherapy treatment. Child Adolesc Ment Health 2013; 18: 88–94.Google Scholar
25. Wille, N, Bullinger, M, Holl, R, et al. Health-related quality of life in overweight and obese youths: results of a multicenter study. Health Qual Life Outcomes 2010; 8: 36.Google Scholar
26. The KIDSCREEN Group Europe. The KISDSCREEN Questionnaires. Quality of Life Questionnaires for Children and Adolescents. Pabst Science Publishers, Lengerich, 2006.Google Scholar
27. 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: 67–75.CrossRefGoogle ScholarPubMed
28. Majnemer, A, Limperopoulos, C, Shevell, M, Rohlicek, C, Rosenblatt, B, Tchervenkov, C. Health and well-being of children with congenital cardiac malformations, and their families, following open-heart surgery. Cardiol Young 2006; 16: 157–164.Google Scholar
29. Moons, P, Norekvål, T. Is sense of coherence a pathway for improving the quality of life of patients who grow up with chronic diseases? A hypothesis. Eur J Cardiovasc Nurs 2006; 5: 16–20.CrossRefGoogle ScholarPubMed
30. Moons, P, Van Deyk, K, De Geest, S, Gewillig, M, Budts, W. Is the severity of congenital heart disease associated with the quality of life and perceived health of adult patients? Heart 2005; 91: 1193–1198.Google Scholar
31. McMurray, R. A life less ordinary: growing up and coping with congenital heart disease. Coronary Health Care 2001; 5: 51–57.Google Scholar
32. Lee, S, Kim, SS. The life of adolescent patients with complex congenital heart disease. J Korean Acad Nurs 2010; 40: 411–422.CrossRefGoogle ScholarPubMed
33. Instituto Brasileiro de Geografia e Estatística. Séries Estatísticas & Séries Históricas - Educação - Distorção idade/série - Ensino Médio, 2013. Retrieved January 3 2013, from http://www.seriesestatisticas.ibge.gov.br/series.aspx?vcodigo=M17&sv=-57&t=distorcao-idadeserie-ensino-medio-serie-nova Google Scholar