Proxy-report in individuals with intellectual disability: A scoping review

Area of Science:

• Disability Studies
• Psychometrics
• Health Services Research

Background:

• Data collection in research involves self-report from individuals or proxy-report from others.
• Evaluating the agreement between self-report and proxy-report is crucial for data validity.

Purpose of the Study:

• To review literature on methods and statistical approaches for evaluating self-report versus proxy-report in individuals with intellectual disability, including Down syndrome.
• To identify knowledge gaps and research needs in this area.

Main Methods:

• A priori formulation of key questions regarding statistical approaches and data collection.
• Comprehensive literature search of the PubMed database.
• Evaluation of evidence quality, summarization of existing literature, and identification of research gaps.

Main Results:

• Fifty relevant original articles were identified and analyzed.
• Studies on individuals with intellectual disability using various statistical approaches showed mixed agreement between self-report and proxy-report.
• Few studies have specifically utilized self-report from individuals with Down syndrome.

Conclusions:

• Existing intellectual disability literature offers valuable insights for future research involving self-report from individuals with Down syndrome.
• Researchers can leverage these findings to better incorporate self-report measures in studies of individuals with Down syndrome.