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Patterns of use of educational and rehabilitation services at school age for children with congenitally malformed hearts*

Published online by Cambridge University Press:  01 June 2008

Annette Majnemer ,
Barbara Mazer ,
Emily Lecker ,
Alison Leduc Carter ,
Catherine Limperopoulos ,
Michael Shevell ,
Charles Rohlicek ,
Bernard Rosenblatt  and
Christo Tchervenkov
Annette Majnemer*
Affiliation:
School of Physical & Occupational Therapy, McGill University-MUHC Montreal Children’s Hospital, Montreal, Canada Departments of Neurology & Neurosurgery, McGill University-MUHC Montreal Children’s Hospital, Montreal, Canada Pediatrics, McGill University-MUHC Montreal Children’s Hospital, Montreal, Canada Centre de Recherche Interdisciplinaire en Réadaptation du Montréal Métropolitain-Jewish Rehabilitation Hospital, Laval, Canada
Barbara Mazer
Affiliation:
School of Physical & Occupational Therapy, McGill University-MUHC Montreal Children’s Hospital, Montreal, Canada Centre de Recherche Interdisciplinaire en Réadaptation du Montréal Métropolitain-Jewish Rehabilitation Hospital, Laval, Canada
Emily Lecker
Affiliation:
Mackay Rehabilitation Centre, Montreal, Canada
Alison Leduc Carter
Affiliation:
Nova Scotia Hospital-Capital Health District Authority, Halifax, Nova Scotia, Canada
Catherine Limperopoulos
Affiliation:
School of Physical & Occupational Therapy, McGill University-MUHC Montreal Children’s Hospital, Montreal, Canada Departments of Neurology & Neurosurgery, McGill University-MUHC Montreal Children’s Hospital, Montreal, Canada Pediatrics, McGill University-MUHC Montreal Children’s Hospital, Montreal, Canada
Michael Shevell
Affiliation:
School of Physical & Occupational Therapy, McGill University-MUHC Montreal Children’s Hospital, Montreal, Canada Departments of Neurology & Neurosurgery, McGill University-MUHC Montreal Children’s Hospital, Montreal, Canada Pediatrics, McGill University-MUHC Montreal Children’s Hospital, Montreal, Canada
Charles Rohlicek
Affiliation:
Pediatrics, McGill University-MUHC Montreal Children’s Hospital, Montreal, Canada Cardiovascular and Thoracic Surgery, McGill University-MUHC Montreal Children’s Hospital, Montreal, Canada
Bernard Rosenblatt
Affiliation:
Departments of Neurology & Neurosurgery, McGill University-MUHC Montreal Children’s Hospital, Montreal, Canada Pediatrics, McGill University-MUHC Montreal Children’s Hospital, Montreal, Canada
Christo Tchervenkov
Affiliation:
Pediatrics, McGill University-MUHC Montreal Children’s Hospital, Montreal, Canada Cardiovascular and Thoracic Surgery, McGill University-MUHC Montreal Children’s Hospital, Montreal, Canada
*
Montreal Children’s Hospital, 2300 Tupper Street, Room A-509, Division of Pediatric Neurology, Montreal, Quebec, H3H 1P3, Canada. Tel: 514-412-4400 ext. 22902; Fax: 514-412-4373; E-mail: annette.majnemer@mcgill.ca
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Abstract

Background

Infants with congenitally malformed hearts who require early open-heart surgery are at high risk for developmental, psychosocial, and academic difficulties. Our objective was to describe the pattern of use of educational supports and rehabilitation services in these children at early school age.

Methods

Parents of children who participated in a prospective study of developmental progress following open-surgery were contacted to participate in a telephone survey. The questionnaire included questions regarding current educational and rehabilitation resources their child was receiving, as well as the needs perceived by the parents for services, and obstacles to accessing services.

Results

The survey was completed by 60 families, the mean age of the children being 8.1 years, with standard deviation of 1.1 years. Of the children, 22% received educational supports, which primarily included supplemental tutoring. Rehabilitation services were received by 23%, speech therapy for 9 children, psychologic support for 6, occupational therapy for 3, and physical therapy for 1. Children receiving these services were significantly more likely to have had low developmental scores in the expected domains, when compared to those not receiving services. The majority of developmentally delayed children were not receiving adequate, if any, resource support. Medical and surgical history was not associated with greater likelihood of receipt of services.

Conclusions

Children with congenitally malformed hearts who are now of school age are at risk for developmental challenges and academic difficulties, yet many do not receive services to optimize performance. Modification of current practice to include systematic, periodic screening, as well as the availability of a resource person for information and referral, may be warranted to meet the ongoing needs of these children and their families, and to optimize their health and well-being.

Keywords

Developmenthealth careresource needsreferral
Type
Original Article
Information
Cardiology in the Young , Volume 18 , Issue 3 , June 2008 , pp. 288 - 296
Copyright
Copyright © Cambridge University Press 2008

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Footnotes

*

Dr Majnemer is a member of the Research Institute of the McGill University Health Centre (MUHC), which is supported in part by the Fonds de Recherche en Santé du Québec (FRSQ).

References

1.Hoffman, JI, Kaplan, S. The incidence of congenital heart disease. J Am Coll Cardiol 2002; 39: 1890–1900.Google Scholar
2.Bellinger, DC, Bernstein, JH, Kirkwood, MW, Rappaport, LA, Newburger, JW. Visual-spatial skills in children after open-heart surgery. Devel Behav Pediatr 2003; 24: 169–179.CrossRefGoogle ScholarPubMed
3.Forbess, JM, Vixconti, KJ, Bellinger, DC, Howe, RJ, Jonas, RA. Neurodevelopmental outcomes after biventricular repair of congenital heart defects. J Thorac Cardiovasc Surg 2002; 123: 631–639.CrossRefGoogle ScholarPubMed
4.Hovels-Gurich, HH, Seghaye, MC, Dabritz, S, Messmer, BJ, von Bernuth, G. Cognitive and motor development in preschool and school-aged children after neonatal arterial switch operation. J Thorac Cardiovasc Surg 1997; 114: 578–585.CrossRefGoogle ScholarPubMed
5.Majnemer, A, Limperopoulos, C, Shevell, M, Rosenblatt, B, Rohlicek, C, Tchervenkov, C. Long-term neuromotor outcome at school entry of infants with congenital heart defects requiring open-heart surgery. J Pediatr 2006; 148: 72–77.Google Scholar
6.Miatton, M, De Wolf, D, Francois, K, Thiery, E, Vingerhoets, G. Neuropsychological performance in school-age children with surgically corrected congenital heart disease. J Pediatr 2007; 151: 73–78.CrossRefGoogle ScholarPubMed
7.Wray, J. Intellectual development of infants, children and adolescents with congenital heart disease. Dev Sci 2006; 9: 368–378.Google Scholar
8.Kirshbom, PM, Flynn, TB, Clancy, RR, et al. Late neurodevelopmental outcome after repair of total anomalous pulmonary venous connection. J Thorac Cardiovasc Surg 2005; 139: 1091–1097.Google Scholar
9.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
10. Majnemer A, Limperopoulos C, Shevell M, Rohlicek C, Rosenblatt B, Tchervenkov C. Developmental and functional outcomes at school entry in children with congenital heart defects who required early open-heart surgery. J Pediatr 2008, in press.CrossRefGoogle Scholar
11.Lewin, RJP, Kendall, L, Sloper, P. Provision of services for rehabilitation of children and adolescents wih congenital cardiac disease: A survey of centers for paediatric cardiology in the United Kingdom. Cardiol Young 2002; 12: 408–410.CrossRefGoogle Scholar
12.Chen, CC, Heinemann, AW, Bode, RK, Granger, CV, Mallinson, T. Impact of pediatric rehabilitation services on children’s functional outcomes. Am J Occup Ther 2004; 58: 44–52.Google Scholar
13.King, GA, MCDougall, J, Tucker, MA, et al. An evaluation of functional school-based services for children with special needs. Phys Occup Ther Pediatr 1999; 19: 5–27.CrossRefGoogle Scholar
14.Limperopoulos, C, Majnemer, A, Shevell, MI, Rosenblatt, B, Rohlicek, C, Tchervenkov, C. Neurologic status of newborns with congenital heart defects prior to open heart surgery. Pediatrics 1999; 103: 403–409.CrossRefGoogle Scholar
15.Limperopoulos, C, Majnemer, A. The role of rehabilitation specialists in Canadian NICUs: A national survey. Phys Occup Ther Pediatr 2002; 22: 57–72.CrossRefGoogle ScholarPubMed
16.Limperopoulos, C, Majnemer, A, Shevell, MI, Rosenblatt, B, Rohlicek, C, Tchervenkov, C. Neurodevelopmental status of newborns and infants with congenital heart defects before and after open heart surgery. J Pediatr 2000; 137: 638–645.Google Scholar
17.Limperopoulos, C, Majnemer, A, Shevell, M, et al. Functional limitations in young children with congenital heart defects following cardiac surgery. Pediatrics 2001; 108: 1325–1331.Google Scholar
18.Limperopoulos, C, Majnemer, A, Shevell, M, Rohlicek, C, Rosenblatt, B, Tchervenkov, C, Darwish, HZ. Predictors of developmental disabilities after open heart surgery in young children with congenital heart defects. J Pediatrics 2002; 141: 51–58.CrossRefGoogle ScholarPubMed
19.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
20.Psychological Corporation. WPPSI-R: Wechsler Preschool and Primary Scale of Intelligence-reivesed. Harcourt Brace Jovanovich, San Antonio, 1989.Google Scholar
21.Folio, RM, Fewell, RR. Peabody Developmental Motor Scales and Activity Cards. DLM Teaching Resources, Allen, Texas, 1983.Google Scholar
22.Achenbach, TM. Manual for the CBCL/4-18 and 1991 profile. University of Vermont, Department of Psychiatry, Burlington, Vermont, 1991.Google Scholar
23.Dunn, LM. Peabody Picture Vocabulary Test, Third Edition. American Guidance Service, Circle Pines, Minnesota, 1997.Google Scholar
24.Sparrow, S, Balla, DA, Cicchetti, DV. Vineland Adaptive Behavior Scales, Interview Edition. Survey Form Manual: A revision of the Vineland Social Maturity Scale by EA Doll. American Guidance Service, Circle Pines, Minnesota, 1984.Google Scholar
25.Uniform Data System for Medical Rehabilitation. WeeFIM SystemsmClinical Guide. Version 5.01. University of Buffalo, Buffalo, NY, 1998.Google Scholar
26.Bellinger, DC, Wypij, D, duPlessis, AJ, et al. Neurodevelopmental status at eight years in children with dextr-transpositin of the great arteries: The Boston Circulatory Arrest Trial. J Thorac Cardiovasc Surg 2003; 126: 1385–1396.CrossRefGoogle ScholarPubMed
27.Kendall, L, Sloper, P, Lewin, RJP, Parsons, JM. The views of young people with congenital cardiac disease on designing the services for their treatment. Cardiol Young 2003; 13: 11–19.Google Scholar
28.Kendall, L, Sloper, P, Lewin, RJP, Parsons, JM. The views of parents concerning the planning of services for rehabilitation of families of children with congenital cardiac disease. Cardiol Young 2003; 13: 20–27.Google Scholar
29.Spall, JA. Patient-centred services. Cardiol Young 2003; 13: 3–6.Google Scholar
30.Cheuk, DKL, Wong, SMY, Choi, YP, Chau, AKT, Cheung, YF. Parents’ understanding of their child’s congenital heart disease. Heart 2004; 90: 435–439.Google Scholar
31.Tak, YR, McCubbin, M. Family stress, perceived social support and coping following the diagnosis of a child’s congenital heart disease. J Adv Nurs 2002; 39: 190–198.Google Scholar
32.McMurray, R, Kendall, L, Parsons, JM, et al. A life less ordinary: growing up and coping with congenital heart disease. Coronary Health Care 2001; 5: 51–57.CrossRefGoogle Scholar
33.Lunt, D, Briffa, T, Briffa, NK, Ramsay, J. Physical activity levels of adolescents with congenital heart disease. Austr J Physiother 2003; 49: 43–50.CrossRefGoogle ScholarPubMed
34.Fredriksen, PM, Kahrs, N, Blaasvaer, S, et al. Effect of physical training in children and adolescents with congenital heart disease. Cardiol Young 2000; 10: 107–114.Google Scholar
35.Rhodes, J, Curran, TJ, Camil, L, et al. Sustained effects of cardiac rehabilitation in children with serious congenital heart disease. Pediatrics 2006; 118: e586–e593.CrossRefGoogle ScholarPubMed
36.Samango-Sprouse, C, Suddaby, EC. Developmental concerns in children with congenital heart disease. Curr Opin Cardiol 1997; 12: 91–98.CrossRefGoogle ScholarPubMed
37.King, G, Cathers, T, King, S, Rosenbaum, P. Major elements of parents’ satisfaction and dissatisfaction with pediatric rehabilitation services. Children’s Health Care 2001; 30: 111–134.CrossRefGoogle Scholar
38.Pye, S, Green, A. Parent education after newborn congenital heart surgery. Adv Neonatal Care 2003; 3: 247–256.Google Scholar
39.Weinberg, S, Kern, J, Weiss, K, Ross, G. Developmental screening of children diagnosed with congenital heart defects. Clin Pediatr 2001; 40: 497–501.Google Scholar
40.Feldman, DE, Champagen, F, Korner-Bitensky, N, Meshefedjian, G. Waiting time for rehabilitation services for children with physical disabilities. Child Care Health Dev 2002; 28: 351–358.Google Scholar
41.Majnemer, A, Shevell, MI, Rosenbaum, P, Abrahamowicz, M. Early rehabilitation service utilization patterns in young children with developmental delays. Child Care Health Dev 2002; 28: 29–37.Google Scholar
42.Wernovsky, G, Rome, JJ, Tabbutt, S, et al. Guidelines for the outpatient management of complex congenital heart disease. Congenital Heart Disease 2006; 1: 10–26.Google Scholar
43.Limperopoulos, C, Majnemer, A, Steinbach, CL, Shevell, MI. Equivalence reliability of the Vineland Adaptive Behavior Scale between in-person and telephone administration. Phys Occup Ther Pediatr 2006; 26: 115–127.Google Scholar