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Outcome after surgical repair of congenital cardiac malformations at school age

Published online by Cambridge University Press:  22 December 2006

Rachel E.A. van der Rijken ,
Ben A.M. Maassen ,
Twiggy L.M. Walk ,
Otto Daniëls  and
Gerdine M. Hulstijn-Dirkmaat
Rachel E.A. van der Rijken
Affiliation:
Department of Medical Psychology, Radboud University Nijmegen Medical Centre, Nijmegen, The Netherlands
Ben A.M. Maassen
Affiliation:
Department of Medical Psychology, Radboud University Nijmegen Medical Centre, Nijmegen, The Netherlands
Twiggy L.M. Walk
Affiliation:
Children's Heart Centre, Radboud University Nijmegen Medical Centre, Nijmegen, The Netherlands
Otto Daniëls
Affiliation:
Children's Heart Centre, Radboud University Nijmegen Medical Centre, Nijmegen, The Netherlands
Gerdine M. Hulstijn-Dirkmaat
Affiliation:
Department of Medical Psychology, Radboud University Nijmegen Medical Centre, Nijmegen, The Netherlands
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Abstract

Objectives: To explore the long-term physical, educational, behavioural, and emotional outcome of patients undergoing surgical correction of congenital cardiac disease at school age, and to investigate the relation, if any, between the outcome and comorbidity, age and sex, and level of complexity of the cardiac surgery. Methods: Information was obtained concerning 101 patients who underwent open-heart surgery for correction of congenital cardiac malformations between 1992 and 2000 whilst aged from 6 to 16 years. The patients, and their parents, completed the questionnaire “Outcome of congenital heart disease and surgery”, the RAND 36-Item Health Survey, and the Child Behaviour Checklist/Youth Self-Report/Young Adult Self-Report. Results: Of the patients, 26% had comorbidity. Of those without comorbidity, 39% had frequent physical complaints, and 28% experienced limitations due to the cardiac disease. Nevertheless, the patients reported a good subjective state of health, and did not report any behavioural or emotional problems. Patients did show academic difficulties. They had received special education more frequently than their healthy peers, and many had needed to repeat a grade, or had received remedial teaching. Consequently, the educational level of patients was lower than that of their healthy peers. Patients with comorbidity, female patients, and patients who underwent complex surgery, seemed to be most at risk for physical, behavioural, and emotional problems. Conclusion: It is necessary to distinguish between physical state and its appraisal, and clinicians should be aware of this. Further research is needed to find out the cause and nature of the academic difficulties. Groups of patients at risk should be followed closely to enable early interventions.

Keywords

Long term outcomeseducationemotional statebehavioural problems
Type
Original Article
Information
Cardiology in the Young , Volume 17 , Issue 1 , February 2007 , pp. 64 - 71
Copyright
2007 Cambridge University Press

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References

Mahle WT. Neurologic and cognitive outcomes in children with congenital heart disease. Curr Opin Pediatr 2001; 13: 482–486.Google Scholar
Bellinger DC, Bernstein JH, Kirkwood MW, Rappaport LA, Newburger JW. Visual-spatial skills in children after open-heart surgery. J Dev Behav Pediatr 2003; 24: 169–179.Google Scholar
Samango-Sprouse C, Suddaby EC. Developmental concerns in children with congenital heart disease. Curr Opin Cardiol 1997; 12: 91–98.Google Scholar
Utens EMWJ, Verhulst FC, Erdman RAM, Meijboom FJ, Duivenvoorden HJ, Hess J. Psychosociaal functioneren van jeugdigen en jong-volwassenen 9 jaar en langer na operatieve behandeling van een aangeboren hartafwijking op de kinderleeftijd [Psychosocial functioning of children, adolescents, and young adults nine years and longer after surgical correction for congenital heart disease in childhood]. Ned Tijdschr Geneeskd 1996; 140: 1126–1130.Google Scholar
Wright M, Nolan T. Impact of cyanotic heart disease on school performance. Arch Dis Child 1994; 71: 64–70.Google Scholar
DeMaso DR, Campis LK, Wypij D, Bertram S, Lipshitz M, Freed M. The impact of maternal perceptions and medical severity on the adjustment of children with congenital heart disease. J Pediatr Psychol 1991; 16: 137–149.Google Scholar
Van Rijen EHM, Utens EMWJ, Roos-Hesselink JW, et al. Psychosocial functioning of the adult with congenital heart disease: A 20–33 years follow-up. Eur Heart J 2003; 24: 673–683.Google Scholar
Nieminen H, Sairanen H, Tikanoja T, et al. Long-term results of pediatric cardiac surgery in Finland: Education, employment, marital status, and parenthood. Pediatrics 2003; 112: 1345–1350.Google Scholar
Ternestedt BM, Wall K, Oddsson H, Riesenfeld 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
Kamphuis M, Ottenkamp J, Vliegen HW, et al. Health related quality of life and health status in adult survivors with previously operated complex congenital heart disease. Heart 2002; 87: 356–362.Google Scholar
Fekkes M, Kamphuis RP, Ottenkamp J, et al. Health-related quality of life in young adults with minor congenital heart disease. Psychol Health 2001; 16: 239–250.Google Scholar
Moons P, De Bleser L, Budts W, et al. Health status, functional abilities, and quality of life after the Mustard or Senning operation. Ann Thorac Surg 2004; 77: 1359–1365.Google Scholar
Cox D, Lewis G, Stuart G, Murphy K. A cross-sectional study of the prevalence of psychopathology in adults with congenital heart disease. J Psychosom Res 2002; 52: 65–68.Google Scholar
Utens EM, Versluis-Den Bieman HJ, Verhulst FC, Meijboom FJ, Erdman RA, Hess J. Psychopathology in young adults with congenital heart disease: Follow-up results. Eur Heart J 1998; 19: 647–651.Google Scholar
Lacour-Gayet F. Risk stratification theme for congenital heart surgery. Semin Thorac Cardiovasc Surg Pediatr Card Surg Annu 2002; 5: 148–152.Google Scholar
Jenkins KJ, Gauvreau K, Newburger JW, Spray TL, Moller JH, Iezzoni LI. Consensus-based method for risk adjustment for surgery for congenital heart disease. J Thorac Cardiovasc Surg 2002; 123: 110–118.Google Scholar
Van der Rijken R. Vragenlijst “Status van patiënten met een aangeboren hartafwijking na hartchirurgie” [Questionnaire “Outcome of congenital heart disease and surgery”]. Unpublished questionnaire. Department of Medical Psychology, Radboud University Nijmegen Medical Centre, Nijmegen, The Netherlands, 2003.
Hays RD, Sherbourne CD, Mazel RM. The RAND 36-Item Health Survey 1.0. Health Econ 1993; 2: 217–227.Google Scholar
Van der Zee KI, Sanderman R. Het meten van de algemene gezondheidstoestand met de RAND-36: een handleiding [Measurement of general health status by means of the RAND-36: A manual]. Noordelijk Centrum voor Gezondheidsvraagstukken, Groningen, The Netherlands, 1993.
Achenbach TM, Rescorla LA. Manual for the ASEBA School-Age Forms & Profiles. University of Vermont, Research Center for Children, Youth, & Families, Burlington, 2001.
Verhulst FC, Van der Ende J. Gedragsvragenlijst voor kinderen van 6–18 jaar [Child Behaviour Checklist for ages 6–18]. Erasmus Medical Centre – Sophia Children's Hospital, Rotterdam, The Netherlands, 2001.
Verhulst FC, Van der Ende J. Zelf in te vullen vragenlijst voor 11–18 jarigen [Youth Self-Report for ages 11–18]. Erasmus Medical Centre – Sophia Children's Hospital, Rotterdam, The Netherlands, 2001.
Achenbach TM. Manual for the Young Adult Self-Report and Young Adult Behavior Checklist. University of Vermont, Department of Psychiatry, Burlington, 1997.
Verhulst FC. Vragenlijst voor jong-volwassenen van 18–30 jaar [Young Adult Self-Report for ages 18–30]. Erasmus Medical Centre, Rotterdam, The Netherlands, 1997.
Statistics Netherlands. Zittenblijvers in het algemeen voortgezet onderwijs [Repeating a grade in regular secondary education]. Kwartaalschrift Onderwijsstatistieken 2000; 7: 33.
Statistics Netherlands. Regulier onderwijs: instellingen en leerlingen [Regular education: institutions and students]. Statistics Netherlands, Voorburg/Heerlen, 2003.
Rose MS, Koshman ML, Spreng S, Sheldon R. Statistical issues encountered in the comparison of health-related quality of life in diseased patients to published general population norms: Problems and solutions. J Clin Epidemiol 1999; 52: 405–412.Google Scholar
Gledhill J, Rangel L, Garralda E. Surviving chronic physical illness: Psychosocial outcome in adult life. Arch Dis Child 2000; 83: 104–110.Google Scholar
Noll RB, Gartstein MA, Vannatta K, Correll J, Bukowski WM, Davies WH. Social, emotional, and behavioral functioning of children with cancer. Pediatrics 1999; 103: 71–78.Google Scholar
Singer MA, Hopman WM, MacKenzie TA. Physical functioning and mental health in patients with chronic medical conditions. Qual Life Res 1999; 8: 687–691.Google Scholar
Fortin M, Lapointe L, Hudon C, Vanasse A, Ntetu AL, Maltais D. Multimorbidity and quality of life in primary care: A systematic review. Health Qual Life Outcomes 2004; 2: 51.Google Scholar
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: 251–260.Google Scholar
Van Rijen EHM. Psychosocial aspects of congenital heart disease in adulthood: A longitudinal cohort study of 20–33 years follow-up [dissertation]. Erasmus Medical Centre, Rotterdam, The Netherlands, 2003.