Adaptive behavior in adolescents and adults with Down syndrome

Results from a 6-month longitudinal study

Gail A. Spiridigliozzi, Celia Goeldner, Jamie O Edgin, Sarah J. Hart, Jana Noeldeke, Lisa Squassante, Jeannie Visootsak, James H. Heller, Omar Khwaja, Priya S. Kishnani, Xavier Liogier d'Ardhuy

Research output: Contribution to journalArticle

Abstract

Measures of adaptive behavior are important in the assessment and treatment of individuals with intellectual disabilities (ID). The purpose of the current study was to evaluate the stability of an established and a novel measure of adaptive behavior over time, and their suitability as outcome measures in clinical trials targeting individuals with Down syndrome (DS). This 6-month, longitudinal, noninterventional, multinational study included adolescents (12–17 years) and adults (18–30 years) with DS. Participants were from seven countries (11 different sites) with English, Spanish and French as their native language. The Vineland Adaptive Behavior Scales-II (VABS-II) and a newly developed Clinician Global Impression (CGI) scale were administered at baseline, 1 and 6 months. Adults had lower composite standard scores on all domains of the VABS-II compared with adolescents. The communication domain was a weakness relative to the socialization and daily living skills domains on the VABS-II and the CGI-Severity scale. These findings were stable over 6 months, as exhibited by high intraclass correlations (>0.75). These results provide valuable baseline data for use in trial design and endpoint selection for studies including individuals with DS. ClinicalTrials.gov identifier: NCT01580384.

Original languageEnglish (US)
JournalAmerican Journal of Medical Genetics, Part A
DOIs
StateAccepted/In press - Jan 1 2018

Fingerprint

Psychological Adaptation
Down Syndrome
Longitudinal Studies
Socialization
Intellectual Disability
Language
Communication
Outcome Assessment (Health Care)
Clinical Trials

Keywords

  • adaptive behavior
  • CGI-I
  • CGI-S
  • Down syndrome
  • intellectual disability
  • VABS-II

ASJC Scopus subject areas

  • Genetics
  • Genetics(clinical)

Cite this

Adaptive behavior in adolescents and adults with Down syndrome : Results from a 6-month longitudinal study. / Spiridigliozzi, Gail A.; Goeldner, Celia; Edgin, Jamie O; Hart, Sarah J.; Noeldeke, Jana; Squassante, Lisa; Visootsak, Jeannie; Heller, James H.; Khwaja, Omar; Kishnani, Priya S.; Liogier d'Ardhuy, Xavier.

In: American Journal of Medical Genetics, Part A, 01.01.2018.

Research output: Contribution to journalArticle

Spiridigliozzi, GA, Goeldner, C, Edgin, JO, Hart, SJ, Noeldeke, J, Squassante, L, Visootsak, J, Heller, JH, Khwaja, O, Kishnani, PS & Liogier d'Ardhuy, X 2018, 'Adaptive behavior in adolescents and adults with Down syndrome: Results from a 6-month longitudinal study', American Journal of Medical Genetics, Part A. https://doi.org/10.1002/ajmg.a.60685
Spiridigliozzi, Gail A. ; Goeldner, Celia ; Edgin, Jamie O ; Hart, Sarah J. ; Noeldeke, Jana ; Squassante, Lisa ; Visootsak, Jeannie ; Heller, James H. ; Khwaja, Omar ; Kishnani, Priya S. ; Liogier d'Ardhuy, Xavier. / Adaptive behavior in adolescents and adults with Down syndrome : Results from a 6-month longitudinal study. In: American Journal of Medical Genetics, Part A. 2018.
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