Measurement of Developmental and Behavioral Concerns in Toddlers with Tuberous Sclerosis Complex

Aim To better understand behavioral concerns as measured by the TSC Associated Neuropsychiatric Disorders (TAND) Checklist in young children with tuberous sclerosis complex (TSC). Method The TAND Checklist was developed as a clinical screener for neurodevelopmental disorders in TSC. Most studies have described patterns in older children and adults. We examined patterns of caregiver responses to the TAND Checklist in 90 toddlers with TSC (12-23 months n=60; 24-36 months n=30) through data collected during a baseline visit of two TSC early intervention studies. Results Over 90% of caregivers reported at least one behavioral concern related to TAND. The number of behavioral concerns increased with age. Delayed language was the most frequently reported concern across ages (12-23 months: 58.3%, 24-36 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. Interpretation 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.