Kathleen A Mussatto1, Danielle Hollenbeck-Pringle2, Felicia Trachtenberg2, Erica Sood3, Renee Sananes4, Nancy A Pike5, Linda M Lambert6, William T Mahle7, David J Goldberg8, Caren S Goldberg9, Carolyn Dunbar-Masterson10, Michelle Otto11, Bradley S Marino12, Bronwyn H Bartle13, Ismee A Williams14, Jeffrey P Jacobs15, Sinai C Zyblewski16, Victoria L Pemberton17. 1. 1Children's Hospital of Wisconsin,Herma Heart Center, Milwaukee,Wisconsin,United States of America. 2. 2New England Research Institutes, Inc.,Watertown,Massachusetts,United States of America. 3. 3Nemours/Alfred I. duPont Hospital for Children,Department of Pediatrics, Wilmington,Delaware,United States of America. 4. 4The Hospital for Sick Children,Department of Pediatrics, Toronto,Ontario,Canada. 5. 5Children's Hospital Los Angeles,Department of Pediatrics, Los Angeles,California,United States of America. 6. 6Primary Children's Hospital,Department of Pediatrics, Salt Lake City,Utah,United States of America. 7. 7Children's Healthcare of Atlanta,Department of Pediatrics, Atlanta,Georgia,United States of America. 8. 8Children's Hospital of Philadelphia,Department of Pediatrics, Philadelphia,Pennsylvania,United States of America. 9. 9University of Michigan Health System,Department of Pediatrics, Ann Arbor,Michigan,United States of America. 10. 10Boston Children's Hospital,Department of Pediatrics, Boston,Massachusetts,United States of America. 11. 11Medical College of Wisconsin,Department of Pediatrics, Milwaukee,Wisconsin,United States of America. 12. 12Ann & Robert H. Lurie Children's Hospital,Department of Pediatrics, Chicago,Illinois,United States of America. 13. 13Duke University Hospital,Department of Pediatrics, Durham,North Carolina,United States of America. 14. 14Department of Pediatrics,New York State Psychiatric Institute,Department of Developmental Neuroscience,Morgan Stanley Children's Hospital of New York-Presbyterian,New York,New York,United States of America. 15. 15Johns Hopkins All Children's Hospital,Johns Hopkins University,Department of Pediatrics, Saint Petersburg,Florida and Baltimore,Pediatric Heart Network, Maryland,United States of America. 16. 16Medical University of South Carolina,Department of Pediatrics, Charleston,South Carolina,United States of America. 17. 17National Heart, Lung, and Blood Institute,Bethesda,Pediatric Heart Network, Maryland,United States of America.
Abstract
OBJECTIVE: Children with hypoplastic left heart syndrome are at a risk for neurodevelopmental delays. Current guidelines recommend systematic evaluation and management of neurodevelopmental outcomes with referral for early intervention services. The Single Ventricle Reconstruction Trial represents the largest cohort of children with hypoplastic left heart syndrome ever assembled. Data on life events and resource utilisation have been collected annually. We sought to determine the type and prevalence of early intervention services used from age 1 to 4 years and factors associated with utilisation of services. METHODS: Data from 14-month neurodevelopmental assessment and annual medical history forms were used. We assessed the impact of social risk and geographic differences. Fisher exact tests and logistic regression were used to evaluate associations. RESULTS: Annual medical history forms were available for 302 of 314 children. Greater than half of the children (52-69%) were not receiving services at any age assessed, whereas 20-32% were receiving two or more therapies each year. Utilisation was significantly lower in year 4 (31%) compared with years 1-3 (with a range from 40 to 48%) (p<0.001). Social risk factors were not associated with the use of services at any age but there were significant geographic differences. Significant delay was reported by parents in 18-43% of children at ages 3 and 4. CONCLUSION: Despite significant neurodevelopmental delays, early intervention service utilisation was low in this cohort. As survival has improved for children with hypoplastic left heart syndrome, attention must shift to strategies to optimise developmental outcomes, including enrolment in early intervention when merited.
OBJECTIVE:Children with hypoplastic left heart syndrome are at a risk for neurodevelopmental delays. Current guidelines recommend systematic evaluation and management of neurodevelopmental outcomes with referral for early intervention services. The Single Ventricle Reconstruction Trial represents the largest cohort of children with hypoplastic left heart syndrome ever assembled. Data on life events and resource utilisation have been collected annually. We sought to determine the type and prevalence of early intervention services used from age 1 to 4 years and factors associated with utilisation of services. METHODS: Data from 14-month neurodevelopmental assessment and annual medical history forms were used. We assessed the impact of social risk and geographic differences. Fisher exact tests and logistic regression were used to evaluate associations. RESULTS: Annual medical history forms were available for 302 of 314 children. Greater than half of the children (52-69%) were not receiving services at any age assessed, whereas 20-32% were receiving two or more therapies each year. Utilisation was significantly lower in year 4 (31%) compared with years 1-3 (with a range from 40 to 48%) (p<0.001). Social risk factors were not associated with the use of services at any age but there were significant geographic differences. Significant delay was reported by parents in 18-43% of children at ages 3 and 4. CONCLUSION: Despite significant neurodevelopmental delays, early intervention service utilisation was low in this cohort. As survival has improved for children with hypoplastic left heart syndrome, attention must shift to strategies to optimise developmental outcomes, including enrolment in early intervention when merited.
Entities:
Keywords:
CHD; early intervention; neurodevelopmental disorders
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