title: Patterns of use of educational and rehabilitation services at school age for children with congenitally malformed hearts.
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.
authors.affiliation: School of Physical & Occupational Therapy, McGill University-MUHC Montreal Children's Hospital, Montreal, Canada. annette.majnemer@mcgill.ca
authors.forename: Annette
authors.initials: A
authors.lastname: Majnemer
authors.forename: Barbara
authors.initials: B
authors.lastname: Mazer
authors.forename: Emily
authors.initials: E
authors.lastname: Lecker
authors.forename: Alison
authors.initials: A
authors.lastname: Leduc Carter
authors.forename: Catherine
authors.initials: C
authors.lastname: Limperopoulos
authors.forename: Michael
authors.initials: M
authors.lastname: Shevell
authors.forename: Charles
authors.initials: C
authors.lastname: Rohlicek
authors.forename: Bernard
authors.initials: B
authors.lastname: Rosenblatt
authors.forename: Christo
authors.initials: C
authors.lastname: Tchervenkov
mesh_terms: D002648:Child; D002658:Developmental Disabilities / Q000534:rehabilitation*; D005260:Female; D006330:Heart Defects, Congenital / Q000150:complications* / Q000534:rehabilitation / Q000601:surgery*; D006801:Humans; D008297:Male; D009674:Nova Scotia; D009788:Occupational Therapy / Q000706:statistics & numerical data; D012017:Referral and Consultation; D012046:Rehabilitation / Q000706:statistics & numerical data*; D013070:Speech Therapy / Q000706:statistics & numerical data; D013663:Teaching