Skip to main page content
U.S. flag

An official website of the United States government

Dot gov

The .gov means it’s official.
Federal government websites often end in .gov or .mil. Before sharing sensitive information, make sure you’re on a federal government site.

Https

The site is secure.
The https:// ensures that you are connecting to the official website and that any information you provide is encrypted and transmitted securely.

Access keys NCBI Homepage MyNCBI Homepage Main Content Main Navigation
. 2024 Jun:155:62-67.
doi: 10.1016/j.pediatrneurol.2024.03.014. Epub 2024 Mar 22.

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

Nicole M McDonald  1 , Sydney Jacobs  2 , Carly Hyde  3 , Connie Kasari  3 , Shafali S Jeste  2
Affiliations

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

Nicole M McDonald et al. Pediatr Neurol. 2024 Jun.

Abstract

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.

Keywords: Behavioral concerns; TAND; TAND Checklist; TSC-Associated Neuropsychiatric Disorders; Toddlers; Tuberous sclerosis complex.

PubMed Disclaimer

Conflict of interest statement

Declaration of competing interest The authors declare the following financial interests/personal relationships which may be considered as potential competing interests: Nicole McDonald reports a relationship with TSC Alliance that includes travel reimbursement. Shafali Jeste reports a relationship with TSC Alliance that includes board membership and travel reimbursement. Connie Kasari reports a relationship with TSC Alliance that includes travel reimbursement. If there are other authors, they declare that they have no known competing financial interests or personal relationships that could have appeared to influence the work reported in this paper.

Figures

Figure 1.
Figure 1.
Proportion of participants whose parents endorsed at least one behavior in the factors identified by Alperin et al. . Chi-square analyses performed to analyze age group differences, *p < .05, **p < .01. ASD=Autism spectrum disorder. Note that ASD-like behavior included the very commonly endorsed concern related to delayed language, which is likely driving the high proportion of participants in this group.
See this image and copyright information in PMC

Similar articles

See all similar articles

References

    1. Crino PB. Evolving neurobiology of tuberous sclerosis complex. Acta Neuropathol. 2013; 125(3): 317–332. - PubMed
    1. de Vries PJ, Heunis TM, Vanclooster S, Chambers N, Bissell S, Byars AW, et al. International consensus recommendations for the identification and treatment of tuberous sclerosis complex-associated neuropsychiatric disorders (TAND). J Neurodev Disord. 2023.15(1): 32. - PMC - PubMed
    1. de Vries PJ, Whittemore VH, Leclezio L, Byars AW, Dunn D, Ess KC, et al. Tuberous sclerosis associated neuropsychiatric disorders (TAND) and the TAND Checklist. Pediatr Neurol. 2015; 52(1): 25–35. - PMC - PubMed
    1. de Vries PJ, Leclezio L, Gardner-Lubbe S, Krueger D, Sahin M, Sparagana S, et al. Multivariate data analysis identifies natural clusters of Tuberous Sclerosis Complex Associated Neuropsychiatric Disorders (TAND). Orphanet J Rare Dis. 2021; 16(1): 447. - PMC - PubMed
    1. Alperin S, Krueger DA, Franz DN, Agricola KD, Stires G, Horn PS, et al. Symptom rates and profile clustering in tuberous sclerosis complex-associated neuropsychiatric disorders (TAND). J Neurodev Disord. 2021; 13(1): 60. - PMC - PubMed