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Measurement of Developmental and Behavioral Concerns in Toddlers With Tuberous Sclerosis Complex
Nicole M McDonald1, Sydney Jacobs2, Carly Hyde1
1UCLA Semel Institute of Neuroscience and Human Behavior, David Geffen School of Medicine, Los Angeles, California.
Pediatric Neurology
|April 11, 2024
Summary
Behavioral concerns are prevalent in toddlers with Tuberous Sclerosis Complex (TSC), increasing with age. The TAND Checklist effectively screens for these issues in young children with TSC, though modifications are suggested.
Area of Science:
- Pediatric Neurology
- Neurodevelopmental Disorders
- Tuberous Sclerosis Complex
Background:
- The Tuberous Sclerosis Complex (TSC)-Associated Neuropsychiatric Disorders (TAND) Checklist screens for neurodevelopmental disorders in TSC.
- Existing research primarily focuses on older children and adults with TSC.
- This study addresses the need to understand behavioral concerns in young children with TSC.
Purpose of the Study:
- To investigate behavioral concerns using the TAND Checklist in toddlers diagnosed with TSC.
- To identify age-related patterns in TAND Checklist responses among young children.
Main Methods:
- Caregiver responses to the TAND Checklist were analyzed from 90 toddlers with TSC (aged 12-36 months).
- Data were collected during baseline visits for two TSC early intervention studies.
- Participants were divided into two age groups: 12-23 months (n=60) and 24-36 months (n=30).
Main Results:
- Over 90% of caregivers reported at least one TAND-related behavioral concern.
- The frequency of reported concerns increased with age.
- Delayed language was the most common concern (58.3% in younger, 86.7% in older toddlers).
- Behavioral items were relevant, but neuropsychological and academic items were not suitable for this age group.
Conclusions:
- TAND symptoms are highly common in toddlers with TSC and appear to escalate with age.
- The TAND Checklist is valuable for identifying behavioral concerns in young TSC patients.
- Adaptations, such as an abbreviated checklist for toddlers, are recommended due to item relevance issues.
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