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Predictors of health-related quality of life in children with chronic heart disease

Published online by Cambridge University Press:  18 May 2017

Mandy Niemitz ,
Diana C. M. Gunst ,
Hedwig H. Hövels-Gürich ,
Michael Hofbeck ,
Renate Kaulitz ,
Christoph Galm ,
Felix Berger ,
Nicole Nagdyman ,
Brigitte Stiller  and
Thomas Borth-Bruhns
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Mandy Niemitz*
Affiliation:
Department of Child and Adolescent Psychiatry/Psychotherapy, University Ulm Medical Centre, Ulm, Germany
Diana C. M. Gunst
Affiliation:
Department of Child and Adolescent Psychiatry/Psychotherapy, University Ulm Medical Centre, Ulm, Germany
Hedwig H. Hövels-Gürich
Affiliation:
Department of Pediatric Cardiology, University Aachen, Germany
Michael Hofbeck
Affiliation:
Department of Pediatric Cardiology, Pulmonology and Intensive Care Medicine, University Tübingen Medical Centre, Germany
Renate Kaulitz
Affiliation:
Department of Pediatric Cardiology, Pulmonology and Intensive Care Medicine, University Tübingen Medical Centre, Germany
Christoph Galm
Affiliation:
Physician, Pediatric Praxis, Biberach, Germany
Felix Berger
Affiliation:
Department of Congenital Heart Diseases/Pediatric Cardiology, German Cardiology Centre Berlin, Germany
Nicole Nagdyman
Affiliation:
German Cardiology Centre Munich, Munich University of Technology, Germany
Brigitte Stiller
Affiliation:
Department of Pediatrics and Adolescent Medicine, University Freiburg Medical Centre, Germany
Thomas Borth-Bruhns
Affiliation:
Sana clinic in Remscheid, (academic) teaching hospital of the University Cologne, Germany
Ines Konzag
Affiliation:
Pediatric Aftercare Clinic, Berlin-Brandenburg gGmbH, Bernau-Waldsiedlung, Germany
Christian Balmer
Affiliation:
Department of Cardiology, University Children’s Hospital Zurich, Switzerland
Lutz Goldbeck
Affiliation:
Department of Child and Adolescent Psychiatry/Psychotherapy, University Ulm Medical Centre, Ulm, Germany
*
Correspondence to: M. Niemitz, Department of Child and Adolescent Psychiatry/Psychotherapy, University Hospital Ulm, Steinhoevelstr. 1, D-89075 Ulm, Germany. Tel: +49 731 500 62660; Fax +49 731 500 62669; E-mail: [email protected]
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Abstract

Objective

Chronic paediatric heart disease is often associated with residual symptoms, persisting functional restrictions, and late sequelae for psychosocial development. It is, therefore, increasingly important to evaluate the health-related quality of life of children and adolescents with chronic heart disease. The aim of this study was to determine medical and socio-demographic variables affecting health-related quality of life in school-aged children and adolescents with chronic heart disease.

Patients and methods

The Pediatric Cardiac Quality of Life Inventory was administered to 375 children and adolescents and 386 parental caregivers. Medical information was obtained from the charts. The socio-demographic information was provided by the patients and caregivers.

Results

Greater disease severity, low school attendance, current cardiac medication, current parental employment, uncertain or limited prognosis, history of connection to a heart–lung machine, number of nights spent in a hospital, and need for treatment in a paediatric aftercare clinic independently contributed to lower health-related quality of life (self-report: R2=0.41; proxy-report: R2=0.46). High correlations between self-reports and parent-proxy reports indicated concordance regarding the evaluation of a child’s health-related quality of life.

Conclusions

Beyond medical treatment, integration into school is important to increase health-related quality of life in children and adolescents surviving with chronic heart disease. Regular screening of health-related quality of life is recommended to identify patients with special needs.

Keywords

Chronic paediatric heart diseasehealth-related quality of lifepredictive factorsself-report and parent-proxy report
Type
Original Articles
Information
Cardiology in the Young , Volume 27 , Issue 8 , October 2017 , pp. 1455 - 1464
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Copyright
© Cambridge University Press 2017 

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References

1. Karsdorp, PA, Everaerd, W, Kindt, M, Mulder, BJM. Psychological and cognitive functioning in children and adolescents with congenital heart disease: a meta-analysis. J Pediatr Psychol 2007; 32: 527–541.Google Scholar
2. Lindinger, A, Schwedler, G, Hense, H-W. Prevalence of congenital heart defects in newborns in Germany: results of the first registration year of the PAN Study (July 2006 to June 2007). Klin Pädiatr 2010; 222: 321–326.Google Scholar
3. Hoffmann, JL, Kaplan, S. The incidence of congenital heart disease. J Am Coll Cardiol 2002; 39: 1890–1900.Google Scholar
4. Marino, BS, Shera, D, Wernovsky, G, et al. The development of the pediatric cardiac quality of life inventory: a quality of life measure for children and adolescents with heart disease. Qual Life Res 2008; 17: 613–626.CrossRefGoogle ScholarPubMed
5. Marino, BS, Lipkin, PH, Newburger, JWPG, 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.Google Scholar
6. Marino, BS, Tomlinson, RS, Drotar, D, et al. Quality-of-life concerns differ among patients, parents, and medical providers in children and adolescents with congenital and acquired heart disease. Pediatrics 2009; 123: e708–e715.Google Scholar
7. Lindberg, L, Olsson, AK, Jogi, P, Jonmaker, C. How common is severe pulmonary hypertension after pediatric cardiac surgery. J Thorac Cardiovasc Surg 2002; 123: 1155–1164.Google Scholar
8. Wren, C, O’Sullivan, JJ. Survival with congenital heart disease and need for follow up in adult life. Heart 2001; 85: 438–443.Google Scholar
9. Politi, P, Pinccinelli, M, Poli, PF, et al. Ten years of ‘extended’ life: quality of life among heart transplantation survivors. Transplantation 2004; 78: 257–263.Google Scholar
10. Mussatto, KA, Tweddell, J. Quality of life following surgery for congenital cardiac malformations in neonates and infants. Cardiol Young 2005; 15 (Suppl 1): 174–178.Google Scholar
11. Nousi, D, Christou, A. Factors affecting the quality of life in children with congenital heart disease. Health Sci J 2010; 4: 94–100.Google Scholar
12. Apitz, J. Pädiatrische Kardiologie: Erkrankungen des Herzens bei Neugeborenen, Säuglingen, Kindern und Heranwachsenden. Steinkopff, Darmstadt, 1998.Google Scholar
13. Alden, B, Gilljam, T, Gillberg, C. Long-term psychological outcome of children after surgery for transposition of the great arteries. Acta Paediatr 1998; 87: 405–410.Google Scholar
14. Bellinger, DC, Rappaport, LA, Wypij, D, Wernovsky, G, Newburger, JW. Patterns of developmental dysfunction after surgery during infancy to correct transposition of the great arteries. Dev Behav Pediatr 1997; 18: 75–83.CrossRefGoogle ScholarPubMed
15. Hirose, Y, Ichida, F, Oshima, Y. Developmental status of young infants with congenital heart disease. Pediatr Int 2007; 49: 468–471.Google Scholar
16. Holm, I, Fredriksen, PM, Fosdahl, MA, Olstad, M, Vollestad, N. Impaired motor competence in school-aged children with complex congenital heart disease. Arch Pediatr Adolesc Med 2007; 161: 945–950.Google Scholar
17. Hoppe, UC, Böhm, M, Dietz, R, et al. Leitlinien zur Therapie der chronischen Herzinsuffizienz. Z Kardiol 2005; 94: 488–509.Google Scholar
18. Mahle, WT, Clancy, RR, Moss, EM, Gerdes, M, Jobes, DR, Wernovsky, G. Neurodevelopmental outcome and lifestyle assessment in school-aged and adolescent children with hypoplastic left heart syndrome. Pediatrics 2000; 105: 1082–1089.Google Scholar
19. Connolly, D, McClowry, S, Hayman, L, Mahony, L, Artman, M. Posttraumatic stress disorder in children after cardiac surgery. J Pediatr 2004; 144: 480–484.Google Scholar
20. Goldbeck, L, Seitz, D. Angeborene Herzerkrankungen. In: von Hagen C, Schwarz HPH, (eds) Psychische Entwicklung bei chronischer Krankheit im Kindes- und Jugendalter, 1st edn. W. Kohlhammer, Stuttgart, 2009: 83–96.Google Scholar
21. Goldberg, S, Simmons, RJ, Newman, J, Campbell, K, Fowler, RS. Congenital heart disease, parental stress, and infant-mother relationships. J Pediatr 1991; 119: 661–666.Google Scholar
22. Hövels-Gürich, HH, Konrad, K, Wiesner, M, et al. Long term behavioral outcome after neonatal arterial switch operation for transposition of the great arteries. Arch Dis Child 2002; 87: 506–510.Google Scholar
23. Hövels-Gürich, HH, Konrad, K, Skorzenski, D, et al. Long-term behavior and quality of life after corrective cardiac surgery in infancy for tetralogy of Fallot or ventricular septal defect. Pediatr Cardiol 2007; 28: 346–354.Google Scholar
24. Birkeland, A-L, Rydberg, A, Hägglöf, B. The complexity of the psychosocial situation in children and adolescents with heart disease. Acta Paediatr 2005; 94: 1495–1501.Google Scholar
25. Bjorbaekmo, W, Engelsrud, G. ‘I am almost like a fish’: an investigation of how children with congenital heart disease experience and perform movement in daily life. Child Care Health Dev 2008; 34: 781–788.CrossRefGoogle Scholar
26. Brosig, CL, Mussatto, KA, Kuhn, EM, Tweddel, JS. Psychosocial outcomes for preschool children and families after surgery for complex congenital heart disease. Pediatr Cardiol 2006; 28: 255–262.Google Scholar
27. Ekman-Joelson, BM, Berntsson, L, Sunnegarth, H. Quality of life in children with pulmonary atresia and intact ventricular septum. Cardiol Young 2004; 15: 615–621.CrossRefGoogle Scholar
28. Goldbeck, L, Melches, J. Quality of life in families of children with congenital heart disease. Qual Life Res 2005; 14: 1915–1924.Google Scholar
29. 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
30. Granberg, M, Rydberg, A, Fisher, AG. Activities in daily living and schoolwork task performance in children with complex congenital heart disease. Acta Paediatr 2008; 97: 1270–1274.Google Scholar
31. Uzark, K, Jones, K, Slusher, J, Limbers, CA, Burwinkle, TM, Varni, JM. Quality of life in children with heart disease as perceived by children and parents. Pediatrics 2008; 121: e1060–e1067.Google Scholar
32. 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: 313–318.CrossRefGoogle ScholarPubMed
33. Spijkerboer, AW, Utens, EMWJ, De Koning, WB, Bogers, AJJC, 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.Google Scholar
34. Krol, Y, Grootenhuis, MA, Destree-Vonk, A, Lubbers, LJ, Koopman, HM, Last, BF. Health Related quality of life in children with congenital heart disease. Psychol Health 2003; 18: 251–260.Google Scholar
35. Berkes, A, Pataki, I, Kiss, M, et al. Measuring health-related quality of life in Hungarian children with heart disease: psychometric properties of the Hungarian version of the Pediatric Quality of Life InventoryTM 4.0 Generic Core Scales and the Cardiac Module. Health Qual Life Outcomes 2010; 8: 14–25.CrossRefGoogle Scholar
36. Wilson, IB, Cleary, PD. Linking clinical variables with health-related quality of life. A conceptual model of patient outcomes. JAMA 1995; 273: 59–65.Google Scholar
37. Drakouli, M, Petsios, K, Giannakopoulos, M, Patiraki, E, Voutoufianaki, I, Matziou, V. Determinants of the quality of life in children and adolescents with CHD: a systematic review. Cardiol Young 2015; 25: 1027–1036.Google Scholar
38. Marino, BS, Beebe, D, Cassedy, A, et al. Executive functioning, gross motor ability and mood are key drivers of poorer quality of life in child and adolescent survivors with complex congenital heart disease. J Am Coll Cardiol 2011; 57: E421.CrossRefGoogle Scholar
39. Toren, P, Horesh, N. Psychiatric morbidity in adolescents operated in childhood for congenital cyanotic heart disease. J Paediatr Child Health 2007; 43: 662–666.Google Scholar
40. Seitz, D, Borth-Bruns, T, Goldbeck, L. Quality of life in children after surgery on the heart-lung machine (Lebensqualität bei Kindern nach Operation an der Herz-Lungen-Maschine). Pädiat Prax 2009; 73: 621–630.Google Scholar
41. Menahem, S, Poulakis, Z, Prior, M. Children subjected to cardiac surgery for congenital heart disease. Part 1: emotional and psychological outcomes. Interact Cardiovasc Thorac Surg 2008; 7: 600–604.Google Scholar
42. 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.Google Scholar
43. Hülser, K, Dubowy, K-O, Knobl, H, Meyer, H, Schölmerich, A. Developmental outcome and psychosocial adjustment in children after surgery for congenital heart disease during infancy. J Reprod Infant Psychol 2007; 25: 139–151.Google Scholar
44. Utens, EM, Verhulst, FC, Duivenvoorden, HJ, Meijboom, FJ, Erdman, RA, Hess, J. Prediction of behavioural and emotional problems in children and adolescents with operated congenital heart disease. Eur Heart J 1998; 19: 801–807.CrossRefGoogle ScholarPubMed
45. Landolt, MA, Valsangiacomo Buechel, ER, Latal, B. Health-related quality of life in children and adolescents after open-heart surgery. J Pediatr 2008; 152: 349–355.CrossRefGoogle ScholarPubMed
46. Maso, DE, Beardslee, DR, Silbert, WR, Fyler, AR, Psychological, DC. Functioning in Children with cyanotic heart defects. J Dev Behav Pediatr 1990; 11: 289–294.Google Scholar
47. Goldbeck, L, Melches, J, Franz, A, Voßbeck, S, Lang, D, Mihatsch, W. Lebensqualität in Familien mit einem herzkranken Kind. Kindh Entwickl 2005; 14: 79–86.Google Scholar
48. Uzark, K, Jones, K, Burwinkle, TM, Varni, JW. The pediatric quality of life inventoryTM in children with heart disease. Prog Pediatr Cardiol 2003; 18: 141–148.Google Scholar
49. Goldbeck, L, Borth-Bruns, T. Translating, validation, and implementation of an instrument to assess Health-related Quality of Life for children and adolescents with a chronic heart disease (Project Completion Report). Ulm University, Working Group: Behavioural Medicine. Ulm, 2013.Google Scholar
50. Marino, BS, Tomlinson, RS, Wernovsky, G, et al. Validation of the pediatric cardiac quality of life inventory. Pediatrics 2010; 126: 498–508.Google Scholar
51. Wild, D, Grove, A, Martin, M, et al. Principles of good practice for translation and cultural adaptation process for patient-reported outcomes (PRO) measures: report of the ISPOR Task Force Translation and Cultural Adaptation. Value Health 2005; 8: 94–104.Google Scholar
52. Laane, KM, Meberg, A, Otterstad, JE. Quality of life in children with congenital heart defects. Acta Paediatr 1997; 86: 975–980.Google Scholar
53. Mair, DD, Puga, FJ, Danielsson, GK. The Fontan procedure for tricuspidal aresia: early and late results of a 25-year experience with 216 patients. J Am Coll Cardiol 2001; 37: 933–939.Google Scholar
54. Gentles, TL, Gauvreau, K, Mayer, J, et al. Functional outcomes after Fontan operation: factors influencing late morbidity. J Thorac Cardiovasc Surg 1997; 114: 392–403.CrossRefGoogle ScholarPubMed
55. The Swedish Handicap Institute. Hjärtebarn – en lättare vardag för svårt hjärtsjuka barn (Heartchild – an easier every day life for children with complex heart disease). Joma Tryck AB, 2002.Google Scholar
56. Casey, FA, Sykes, DH, Craig, BG, Power, R, Mulholland, HC. Behavioral adjustment of children with surgically palliated complex congenital heart disease. J Pediatr Psychol 1996; 21: 335–352.Google Scholar
57. Beardslee, W, Versage, EM, Gladstone, TR. Children of affectively ill parents: a review of the past 10 years. J Am Acad Child Adolesc Psychiatry 1998; 37: 1134–1141.Google Scholar
58. Wiegand-Grefe, S, Petermann, F. Kinder psychisch erkrankter Eltern. Kindh Entwickl 2016; 25: 63–67.CrossRefGoogle Scholar
59. Besier, T, Born, A, Henrich, G, et al. Anxiety, depression, and life satisfaction in parents caring for children with cystic fibrosis. Pediatr Pulmonol 2011; 46: 672–682.Google Scholar
60. Franich-Ray, C, Bright, MA, Anderson, V, et al. Trauma reactions in mothers and fathers after their infant’s cardiac surgery. J Pediatr Psychol 2013; 38: 494–505.Google Scholar
61. Food and Drug Administration. Guidance for Industry: Patient-Reported Outcome Measures: Use in Medical Product Development to Support Labelling Claims. Center for Drug Evaluation and Research, Food and Drug Administration, Rockville, MD, 2009.Google Scholar