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Improving Developmental Abilities in Infants With Tuberous Sclerosis Complex: A Pilot Behavioral Intervention Study.

Authors
  • McDonald, Nicole M1
  • Hyde, Carly1
  • Choi, April Boin1
  • Gulsrud, Amanda C1
  • Kasari, Connie1
  • Nelson, Charles A 3rd1
  • Jeste, Shafali S1
  • 1 UCLA Semel Institute for Neuroscience and Human Behavior, Los Angeles, California (Dr McDonald, Gulsrud, Kasari, and Jeste and Ms Hyde); Harvard Graduate School of Education, Boston, Massachusetts (Ms Choi); and Boston Children's Hospital, Harvard University, Boston, Massachusetts (Dr Nelson).
Type
Published Article
Journal
Infants and young children
Publication Date
Jan 01, 2020
Volume
33
Issue
2
Pages
108–118
Identifiers
DOI: 10.1097/iyc.0000000000000160
PMID: 32467653
Source
Medline
Keywords
Language
English
License
Unknown

Abstract

Tuberous sclerosis complex (TSC) is a rare genetic syndrome that confers risk for neurodevelopmental disorders, including autism spectrum disorder and intellectual disability. Delays in social communication and early cognitive abilities are observable as early as 9 months of age in children with TSC; however, there have been no studies of early behavioral intervention in TSC. We conducted a pilot study of an evidence-based, parent-mediated behavioral intervention focused on improving early social communication and play skills in 5 children with TSC (aged 1-3 years). Participants showed maintenance and sometimes gains in developmental abilities, relative to peers, following intervention. Parents generally found the intervention to be helpful and were able to administer the intervention with fidelity. Preliminary results demonstrate initial feasibility of an early play-based, parent-mediated intervention and support the need for a large-scale, randomized clinical trial in TSC.

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