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

The reviewers searched only PubMed, and they noted that relevant articles may have been missed. One reviewer screened articles and appraised study quality, with only 10% of final articles checked by a second reviewer. The included studies varied in age, diagnosis, setting, instrument, topic, and administration method, so the review could not combine results into one overall conclusion. Only 11 articles clearly described the statistical approach for comparing proxy-report and self-report, and no standard approach emerged. Some studies compared self-report and proxy-report as a secondary aim or used methods intended for instrument validation, which may not be adequate for comparing reporters. Most comparisons used total scores or subscale scores rather than checking agreement on individual items. No included study compared proxy-report and self-report in individuals with Down syndrome, so the evidence does not show how well caregiver answers match client answers in that group. The review identified limited self-report studies in Down syndrome, and three of the four Down syndrome studies were on the same topic by the same research team.

The authors declared no conflict of interest.

Do not conclude that caregiver reports are interchangeable with self-report for people with Down syndrome. The review found no studies comparing proxy-report and self-report in Down syndrome, and agreement was mixed in intellectual disability studies.