Validating the Communication and Symbolic Behavior Scales–Developmental Profile Infant–Toddler Checklist (CSBS–DP ITC) Beyond Infancy in the CDKL5 Deficiency Disorder

Jacinta Saldaris; Helen Leonard; Kingsley Wong; Peter Jacoby; Mary Spence; Eric D. Marsh; Tim A. Benke; Scott Demarest; Jenny Downs

doi:10.1007/s10803-023-06002-w

Validating the Communication and Symbolic Behavior Scales–Developmental Profile Infant–Toddler Checklist (CSBS–DP ITC) Beyond Infancy in the CDKL5 Deficiency Disorder

Jacinta Saldaris, Helen Leonard, Kingsley Wong, Peter Jacoby, Mary Spence, Eric D. Marsh, Tim A. Benke, Scott Demarest, Jenny Downs

Research output: Contribution to journal › Article › peer-review

2 Citations (Scopus)

Abstract

CDKL5 deficiency disorder (CDD) results in early-onset epilepsy and lifelong cognitive and motor impairments. With no validated measure for communication in CDD, this study evaluated the psychometric properties of the Communication and Symbolic Behavior Scales-Developmental Profile Infant Toddler Checklist (CSBS–DP ITC). Caregivers (n = 150; affected individuals aged 1–29 years) completed the CSBS-DP ITC. Distribution of scores indicated a floor effect. There was poor divergent validity for the three-factor model but goodness of fit and convergent validity data were satisfactory for the one-factor model. Individuals with poorer overall functional abilities scored lower on the CSBS-DP ITC. Test–retest reliability was excellent. The floor effect could explain the very high reliability, suggesting problems as a sensitive outcome measure in clinical trials for CDD.

Original language	English
Pages (from-to)	2526-2535
Number of pages	10
Journal	Journal of Autism and Developmental Disorders
Volume	54
Issue number	7
DOIs	https://doi.org/10.1007/s10803-023-06002-w
Publication status	Published - Jul 2024

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Saldaris, J., Leonard, H., Wong, K., Jacoby, P., Spence, M., Marsh, E. D., Benke, T. A., Demarest, S., & Downs, J. (2024). Validating the Communication and Symbolic Behavior Scales–Developmental Profile Infant–Toddler Checklist (CSBS–DP ITC) Beyond Infancy in the CDKL5 Deficiency Disorder. Journal of Autism and Developmental Disorders, 54(7), 2526-2535. https://doi.org/10.1007/s10803-023-06002-w

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title = "Validating the Communication and Symbolic Behavior Scales–Developmental Profile Infant–Toddler Checklist (CSBS–DP ITC) Beyond Infancy in the CDKL5 Deficiency Disorder",

abstract = "CDKL5 deficiency disorder (CDD) results in early-onset epilepsy and lifelong cognitive and motor impairments. With no validated measure for communication in CDD, this study evaluated the psychometric properties of the Communication and Symbolic Behavior Scales-Developmental Profile Infant Toddler Checklist (CSBS–DP ITC). Caregivers (n = 150; affected individuals aged 1–29 years) completed the CSBS-DP ITC. Distribution of scores indicated a floor effect. There was poor divergent validity for the three-factor model but goodness of fit and convergent validity data were satisfactory for the one-factor model. Individuals with poorer overall functional abilities scored lower on the CSBS-DP ITC. Test–retest reliability was excellent. The floor effect could explain the very high reliability, suggesting problems as a sensitive outcome measure in clinical trials for CDD.",

keywords = "CDKL5 deficiency disorder, Communication, Outcome measure, Psychometric",

author = "Jacinta Saldaris and Helen Leonard and Kingsley Wong and Peter Jacoby and Mary Spence and Marsh, {Eric D.} and Benke, {Tim A.} and Scott Demarest and Jenny Downs",

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year = "2024",

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doi = "10.1007/s10803-023-06002-w",

language = "English",

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Saldaris, J , Leonard, H, Wong, K, Jacoby, P, Spence, M, Marsh, ED, Benke, TA, Demarest, S & Downs, J 2024, 'Validating the Communication and Symbolic Behavior Scales–Developmental Profile Infant–Toddler Checklist (CSBS–DP ITC) Beyond Infancy in the CDKL5 Deficiency Disorder', Journal of Autism and Developmental Disorders, vol. 54, no. 7, pp. 2526-2535. https://doi.org/10.1007/s10803-023-06002-w

Validating the Communication and Symbolic Behavior Scales–Developmental Profile Infant–Toddler Checklist (CSBS–DP ITC) Beyond Infancy in the CDKL5 Deficiency Disorder. / Saldaris, Jacinta ; Leonard, Helen; Wong, Kingsley et al.
In: Journal of Autism and Developmental Disorders, Vol. 54, No. 7, 07.2024, p. 2526-2535.

Research output: Contribution to journal › Article › peer-review

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AU - Saldaris, Jacinta

AU - Leonard, Helen

AU - Wong, Kingsley

AU - Jacoby, Peter

AU - Spence, Mary

AU - Marsh, Eric D.

AU - Benke, Tim A.

AU - Demarest, Scott

AU - Downs, Jenny

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AB - CDKL5 deficiency disorder (CDD) results in early-onset epilepsy and lifelong cognitive and motor impairments. With no validated measure for communication in CDD, this study evaluated the psychometric properties of the Communication and Symbolic Behavior Scales-Developmental Profile Infant Toddler Checklist (CSBS–DP ITC). Caregivers (n = 150; affected individuals aged 1–29 years) completed the CSBS-DP ITC. Distribution of scores indicated a floor effect. There was poor divergent validity for the three-factor model but goodness of fit and convergent validity data were satisfactory for the one-factor model. Individuals with poorer overall functional abilities scored lower on the CSBS-DP ITC. Test–retest reliability was excellent. The floor effect could explain the very high reliability, suggesting problems as a sensitive outcome measure in clinical trials for CDD.

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Validating the Communication and Symbolic Behavior Scales–Developmental Profile Infant–Toddler Checklist (CSBS–DP ITC) Beyond Infancy in the CDKL5 Deficiency Disorder

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