Assessing general cognitive and adaptive abilities in adults with Down syndrome: a systematic review.


Journal

Journal of neurodevelopmental disorders
ISSN: 1866-1955
Titre abrégé: J Neurodev Disord
Pays: England
ID NLM: 101483832

Informations de publication

Date de publication:
30 08 2019
Historique:
received: 21 05 2018
accepted: 22 07 2019
entrez: 1 9 2019
pubmed: 1 9 2019
medline: 4 8 2020
Statut: epublish

Résumé

Measures of general cognitive and adaptive ability in adults with Down syndrome (DS) used by previous studies vary substantially. This review summarises the different ability measures used previously, focusing on tests of intelligence quotient (IQ) and adaptive behaviour (AB), and where possible examines floor effects and differences between DS subpopulations. We aimed to use information regarding existing measures to provide recommendations for individual researchers and the DS research community. Nineteen studies reporting IQ test data met inclusion for this review, with 17 different IQ tests used. Twelve of these IQ tests were used in only one study while five were used in two different studies. Eleven studies reporting AB test data met inclusion for this review, with seven different AB tests used. The only AB scales to be used by more than one study were the Vineland Adaptive Behaviour Scale (VABS; used by three studies) and the Vineland Adaptive Behavior Scale 2nd Edition (VABS-II; used by two studies). A variety of additional factors were identified which make comparison of test scores between studies problematic, including different score types provided between studies (e.g. raw scores compared to age-equivalent scores) and different participant inclusion criteria (e.g. whether individuals with cognitive decline were excluded). Floor effects were common for IQ tests (particularly for standardised test scores). Data exists to suggest that floor effects may be minimised by the use of raw test scores rather than standardised test scores. Raw scores may, therefore, be particularly useful in longitudinal studies to track change in cognitive ability over time. Studies assessing general ability in adults with DS are likely to benefit from the use of both IQ and AB scales. The DS research community may benefit from the development of reporting standards for IQ and AB data, and from the sharing of raw study data enabling further in-depth investigation of issues highlighted by this review.

Sections du résumé

BACKGROUND
Measures of general cognitive and adaptive ability in adults with Down syndrome (DS) used by previous studies vary substantially. This review summarises the different ability measures used previously, focusing on tests of intelligence quotient (IQ) and adaptive behaviour (AB), and where possible examines floor effects and differences between DS subpopulations. We aimed to use information regarding existing measures to provide recommendations for individual researchers and the DS research community.
RESULTS
Nineteen studies reporting IQ test data met inclusion for this review, with 17 different IQ tests used. Twelve of these IQ tests were used in only one study while five were used in two different studies. Eleven studies reporting AB test data met inclusion for this review, with seven different AB tests used. The only AB scales to be used by more than one study were the Vineland Adaptive Behaviour Scale (VABS; used by three studies) and the Vineland Adaptive Behavior Scale 2nd Edition (VABS-II; used by two studies). A variety of additional factors were identified which make comparison of test scores between studies problematic, including different score types provided between studies (e.g. raw scores compared to age-equivalent scores) and different participant inclusion criteria (e.g. whether individuals with cognitive decline were excluded). Floor effects were common for IQ tests (particularly for standardised test scores). Data exists to suggest that floor effects may be minimised by the use of raw test scores rather than standardised test scores. Raw scores may, therefore, be particularly useful in longitudinal studies to track change in cognitive ability over time.
CONCLUSIONS
Studies assessing general ability in adults with DS are likely to benefit from the use of both IQ and AB scales. The DS research community may benefit from the development of reporting standards for IQ and AB data, and from the sharing of raw study data enabling further in-depth investigation of issues highlighted by this review.

Identifiants

pubmed: 31470792
doi: 10.1186/s11689-019-9279-8
pii: 10.1186/s11689-019-9279-8
pmc: PMC6716931
doi:

Types de publication

Journal Article Research Support, Non-U.S. Gov't Systematic Review

Langues

eng

Sous-ensembles de citation

IM

Pagination

20

Subventions

Organisme : Medical Research Council
ID : MR/R024901/1
Pays : United Kingdom
Organisme : Wellcome Trust
ID : 098330/Z/12/Z
Pays : United Kingdom

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Auteurs

Sarah Hamburg (S)

Department of Forensic and Neurodevelopmental Sciences, Institute of Psychiatry, Psychology & Neuroscience, Kings College London, London, SE5 8AF, UK. s.hamburg@ucl.ac.uk.
Division of Psychiatry, University College London, London, W1T 7NF, UK. s.hamburg@ucl.ac.uk.
The London Down Syndrome Consortium (LonDownS), London, UK. s.hamburg@ucl.ac.uk.

Bryony Lowe (B)

Division of Psychiatry, University College London, London, W1T 7NF, UK.
The London Down Syndrome Consortium (LonDownS), London, UK.
Department of Psychology, Loughborough University, Loughborough, Leicestershire, LE11 3TU, UK.

Carla Marie Startin (CM)

Department of Forensic and Neurodevelopmental Sciences, Institute of Psychiatry, Psychology & Neuroscience, Kings College London, London, SE5 8AF, UK.
Division of Psychiatry, University College London, London, W1T 7NF, UK.
The London Down Syndrome Consortium (LonDownS), London, UK.

Concepcion Padilla (C)

Department of Psychiatry, Herchel Smith Building for Brain & Mind Sciences, Forvie Site, Robinson Way, Cambridge, CB2 0SZ, UK.

Antonia Coppus (A)

Dichterbij, Center for Intellectual Disabilities, Gennep, The Netherlands.
Department of Primary and Community Care, Radboud University Medical Center, Nijmegen, The Netherlands.

Wayne Silverman (W)

Department of Pediatrics, University of California, Irvine, USA.

Juan Fortea (J)

Memory Unit, Department of Neurology, Hospital de la Santa Creu i Sant Pau-Biomedical Research Institute Sant Pau, Universitat Autònoma de Barcelona, Barcelona, Spain.
Barcelona Down Medical Center, Fundació Catalana de Síndrome de Down, Barcelona, Spain.
Centro de Investigación Biomédica en Red de Enfermedades Neurodegenerativas, CIBERNED, Madrid, Spain.

Shahid Zaman (S)

Department of Psychiatry, Herchel Smith Building for Brain & Mind Sciences, Forvie Site, Robinson Way, Cambridge, CB2 0SZ, UK.

Elizabeth Head (E)

Sanders-Brown Center on Aging, University of Kentucky, 800 South Limestone Street, Lexington, KY, 40536-0230, USA.

Benjamin L Handen (BL)

Department of Psychiatry, University of Pittsburgh School of Medicine, Pittsburgh, PA, 15213, USA.

Ira Lott (I)

Departments of Pediatrics and Neurology, University of California, Irvine, USA.

Weihong Song (W)

Townsend Family Laboratories, Department of Psychiatry, The University of British Columbia, 2255 Wesbrook Mall, Vancouver, BC, V6T 1Z3, Canada.

André Strydom (A)

Department of Forensic and Neurodevelopmental Sciences, Institute of Psychiatry, Psychology & Neuroscience, Kings College London, London, SE5 8AF, UK.
Division of Psychiatry, University College London, London, W1T 7NF, UK.
The London Down Syndrome Consortium (LonDownS), London, UK.

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