Proxy-report in individuals with intellectual disability: A scoping review.
Down syndrome
intellectual disability
proxy report
trisomy 21
Journal
Journal of applied research in intellectual disabilities : JARID
ISSN: 1468-3148
Titre abrégé: J Appl Res Intellect Disabil
Pays: England
ID NLM: 9613616
Informations de publication
Date de publication:
Sep 2022
Sep 2022
Historique:
revised:
04
04
2022
received:
16
06
2021
accepted:
20
05
2022
pubmed:
10
6
2022
medline:
12
8
2022
entrez:
9
6
2022
Statut:
ppublish
Résumé
Views can be collected from individuals (self-report) or others on their behalf (proxy-report). We aimed to review the literature on methods and statistical approaches used to evaluate observer versus self-report responses from individuals with intellectual disability or Down syndrome. A series of key questions related to statistical approaches and data collection methods were formulated a priori to inform the search strategy and review process. These addressed the topics of self-report in individuals with intellectual disability, including Down syndrome. Using the National Library of Medicine database, PubMed, detailed literature searches were performed. The quality of available evidence was then evaluated, the existing literature was summarised, and knowledge gaps and research needs were identified. Fifty relevant original articles were identified which addressed at least one key question. Study details, including: research design, internal validity, external validity, and relevant results are presented. Review of studies of individuals with intellectual disability which used a variety of statistical approaches showed mixed agreement between self-report and proxy-report. Few studies identified to-date have used self-report from individuals with Down syndrome, but lessons from the existing intellectual disability literature can guide researchers to incorporate self-report from individuals with Down syndrome in the future.
Sections du résumé
BACKGROUND
BACKGROUND
Views can be collected from individuals (self-report) or others on their behalf (proxy-report).
OBJECTIVE
OBJECTIVE
We aimed to review the literature on methods and statistical approaches used to evaluate observer versus self-report responses from individuals with intellectual disability or Down syndrome.
METHODS
METHODS
A series of key questions related to statistical approaches and data collection methods were formulated a priori to inform the search strategy and review process. These addressed the topics of self-report in individuals with intellectual disability, including Down syndrome. Using the National Library of Medicine database, PubMed, detailed literature searches were performed. The quality of available evidence was then evaluated, the existing literature was summarised, and knowledge gaps and research needs were identified.
RESULTS
RESULTS
Fifty relevant original articles were identified which addressed at least one key question. Study details, including: research design, internal validity, external validity, and relevant results are presented. Review of studies of individuals with intellectual disability which used a variety of statistical approaches showed mixed agreement between self-report and proxy-report.
CONCLUSION
CONCLUSIONS
Few studies identified to-date have used self-report from individuals with Down syndrome, but lessons from the existing intellectual disability literature can guide researchers to incorporate self-report from individuals with Down syndrome in the future.
Identifiants
pubmed: 35676858
doi: 10.1111/jar.13013
pmc: PMC9378492
mid: NIHMS1810992
doi:
Types de publication
Journal Article
Review
Langues
eng
Sous-ensembles de citation
IM
Pagination
1088-1108Subventions
Organisme : NICHD NIH HHS
ID : K23 HD100568
Pays : United States
Organisme : Eunice Kennedy Shriver National Institute of Child Health & Human Development of the National Institutes of Health
ID : K23HD100568
Informations de copyright
© 2022 John Wiley & Sons Ltd.
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