Proxy respondents and the reliability of the Quality of Life Questionnaire Empowerment factor.

Malone (1999) asked adults with intellectual disability to fill out the QOL-Q Empowerment scale. Staff who knew them well also completed the same scale as proxies.

The team then compared the two sets of scores to see if staff answers matched self-answers.

Staff and self-ratings lined up closely. The correlation was strong and no big gaps appeared between the two views.

Still, the authors warn: proxy data are handy, but they are not the same as hearing from the person.

Krahn et al. (2023) extends this caution. Adults with IDD in focus groups said they want plain-language surveys and their own voices used, not proxy reports, when shaping health policy.

Kaufman et al. (2010) adds a practical lens. Their review shows you can boost participation of adults with ID by using non-invasive tasks and getting consent from substitute decision-makers only when needed.

Piller et al. (2017) ran a similar reliability check with teacher proxies for preschoolers with autism. Both studies find proxy tools can be reliable, yet each reminds us to seek self-report when the person can respond.

You can trust staff-proxy QOL-Q scores when a self-report is impossible, but always try self-report first. Use short, visual questions and obtain surrogate consent only if needed. This keeps data both valid and respectful.