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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).

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