Tetralogy of Fallot Neurodevelopmental Outcomes

1. Tetralogy of Fallot Neurodevelopmental Outcomes October 25, 2013 Tetralogy of Fallot “Spelling It Out” Gwen Alton RN, MN Complex Pediatric Therapies Follow-Up Program

2. TOF population Complex Pediatric Therapies Follow-Up Program • 1999-2008 registered the children with full repairs at < 6 weeks • 2008- register children with shunts prior to full repair up to 6 months of age. • 6 sites across western Canada

3. Total survivors = 44 no chrom abn = 31 Chrom Abn =13 *ECMO

4. Acute Care Variablesmean (sd); n(%)n= 51 No significant difference between groups

5. Acute care variables mean(sd) n=51 No significant difference between groups

6. Acute care variables mean(sd); n(%) n=51 * p= .052 – trend to significance

7. Acute care variables mean(sd); n=51 No significance difference between groups

8. General health Vision Hearing Language – expressive Language comprehension Performance skills Gross motor Fine Motor Behavior Social interaction Intellect Environment Functional Behavior Quality of Life Nutrition Developmental ExaminationComplex Pediatric Therapies Follow-Up Program Multisite assessments Multidisciplinary teams

9. Over view Outcomes n=44

10. Disabilities + General Health– n=35 • Motor: Cerebral Palsy n=2(6%) • Sensory: Vision loss n=1 (with CP) Hearing loss n=1 (2.8%)(unilateral, not aided) • G-tube at 2 year assessment n=9 (5 with Chrom Abn) • At 4 year assessment n=3 (2 with Chrom Abn) • Hospitalizations # 3-9 in first 2 years (non-cardiac)

11. Growth at 2 years: n (%) n=31

12. Outcomes at 2 and 4 years n=35 GAC-General Adaptive Composite; ABAS - Adaptive Behavioral Assessment System No significant difference between groups No difference between CPB/BT group

13. TOF – outcomes n=35 * Skeletal dysplasia, VACTERL, neuroblastoma, dysmorphic

14. Cognitive outcome– n=35 %

15. DEFINITION: Adaptive/Functional • Level to which individuals meet standards of personal self-determination and social conscientiousness that is expected for their age, development and culture. • Includes real life skills such as grooming, dressing, safety, cleaning, making friends, social skills • Used in evaluation of children to determine strengths and weaknesses to help improve their success in school and life

16. GAC – Functional outcome %

17. ABAS II Profile of Function General Adaptive Composite Score (GAC) includes all 10 domains

18. Skill area differences at 2 yr, m(SD)

19. Early Developmental Intervention 0-3 years - is family centered Target groups: Established impairment – e.g. Down Syndrome, Autism Spectrum Disorder Environmental risk – e.g. poverty Biological risk – e.g. early or ongoing illness Availability: -parent requests - community -referral to tertiary level

20. Early Developmental Intervention Benefit – influences child, parent, family and reduces future concerns Child Outcomes - social competence - emotional development - behavioral engagement - motivation Parent Outcomes - resources, advocacy skills

21. What can parents do to provide early assistance to their child? Read, sing, tell stories Watch and listen to see how your child communicates Encourage your child to explore Use words to help your child understand their feelings Give your child the chance to do things for themselves – encourage to keep trying Zero to Three – Early Learning

22. Thank you • All the families and children who have participated – Complex Pediatric Therapies Follow-Up Program • Other sites across Western Canada • NICU, PICU, surgical staff – Stollery Children’s Hospital • 4C staff & therapists – Stollery Children’s Hospital • Glenrose Rehabilitation Hospital – therapist and support staff • Co-chairs – Dr. Charlene Robertson, Dr. Ari Joffe, Dr. Reg Sauvé

23. QUESTIONS