Cardiology in the Young

Original Article

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

Annette Majnemera1a2a3a5 c1, Barbara Mazera1a5, Emily Leckera6, Alison Leduc Cartera7, Catherine Limperopoulosa1a2a3, Michael Shevella1a2a3, Charles Rohliceka3a4, Bernard Rosenblatta2a3 and Christo Tchervenkova3a4

a1 School of Physical & Occupational Therapy, McGill University-MUHC Montreal Children’s Hospital, Montreal, Canada

a2 Departments of Neurology & Neurosurgery, McGill University-MUHC Montreal Children’s Hospital, Montreal, Canada

a3 Pediatrics, McGill University-MUHC Montreal Children’s Hospital, Montreal, Canada

a4 Cardiovascular and Thoracic Surgery, McGill University-MUHC Montreal Children’s Hospital, Montreal, Canada

a5 Centre de Recherche Interdisciplinaire en Réadaptation du Montréal Métropolitain-Jewish Rehabilitation Hospital, Laval, Canada

a6 Mackay Rehabilitation Centre, Montreal, Canada

a7 Nova Scotia Hospital-Capital Health District Authority, Halifax, Nova Scotia, Canada

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.

(Accepted October 31 2007)

Correspondence:

c1 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

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).