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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.
Insights
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.
Background:
The TAND (Tuberous Sclerosis Complex [TSC]-Associated Neuropsychiatric Disorders) Checklist was developed as a clinical screener for neurodevelopmental disorders in TSC. Most studies have described patterns in older children and adults. This study sought to better understand behavioral concerns as measured by the TAND Checklist in young children with TSC.
Methods:
We examined patterns of caregiver responses to the TAND Checklist in 90 toddlers with TSC (12 to 23 months n = 60; 24 to 36 months n = 30) through data collected during baseline visits across two TSC early intervention studies.
Results:
Over 90% of caregivers reported at least one behavioral concern related to TAND. The number of concerns increased with age. Delayed language was the most frequently reported concern across ages (12 to 23 months: 58.3%, 24 to 36 months: 86.7%). Questions related to behavioral concerns were largely relevant in this age range, but questions in other areas, such as neuropsychological or academic function, were not.
Conclusions:
TAND symptoms are very common in toddlers with TSC, and these symptoms may increase with age. The TAND Checklist is a useful tool for identifying behavioral concerns efficiently, but several items and sections are not suited to younger children. Results support the development of an abbreviated form of the TAND Checklist for toddlers.
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