{"title":"Quality of Life Ratings and Proxy Bias in Primary Progressive Aphasia: Two Sides to the Story?","authors":"Leanne Ruggero, Karen Croot, Lyndsey Nickels","doi":"10.1177/15333175231177668","DOIUrl":null,"url":null,"abstract":"<p><p>A valid measure of quality of life is important for clinical goal setting and for evaluating interventions. In the amnestic dementias, proxy-raters (e.g. friends, families, clinicians) typically rate quality of life <i>lower</i> than the self-ratings given by the person with dementia - a proxy bias. This study investigated whether the same proxy bias occurs in Primary Progressive Aphasia (PPA), a language-led dementia.Quality of life was measured in 18 individuals with PPA using self-ratings, and proxy-ratings by their main communication partner, using the Quality of Life in Alzheimer's Disease Scale.There was no strong evidence for proxy bias at a group level, with no consistent pattern across dyads, where proxy- and self-ratings did not show good levels of agreement. We suggest that self-ratings and proxy-ratings of quality of life in PPA are not interchangeable. Higher-powered investigation of the patterns observed here is warranted in future studies.</p>","PeriodicalId":50816,"journal":{"name":"American Journal of Alzheimers Disease and Other Dementias","volume":null,"pages":null},"PeriodicalIF":2.7000,"publicationDate":"2023-01-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC10623902/pdf/","citationCount":"0","resultStr":null,"platform":"Semanticscholar","paperid":null,"PeriodicalName":"American Journal of Alzheimers Disease and Other Dementias","FirstCategoryId":"3","ListUrlMain":"https://doi.org/10.1177/15333175231177668","RegionNum":4,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":null,"EPubDate":"","PubModel":"","JCR":"Q2","JCRName":"CLINICAL NEUROLOGY","Score":null,"Total":0}
引用次数: 0
Abstract
A valid measure of quality of life is important for clinical goal setting and for evaluating interventions. In the amnestic dementias, proxy-raters (e.g. friends, families, clinicians) typically rate quality of life lower than the self-ratings given by the person with dementia - a proxy bias. This study investigated whether the same proxy bias occurs in Primary Progressive Aphasia (PPA), a language-led dementia.Quality of life was measured in 18 individuals with PPA using self-ratings, and proxy-ratings by their main communication partner, using the Quality of Life in Alzheimer's Disease Scale.There was no strong evidence for proxy bias at a group level, with no consistent pattern across dyads, where proxy- and self-ratings did not show good levels of agreement. We suggest that self-ratings and proxy-ratings of quality of life in PPA are not interchangeable. Higher-powered investigation of the patterns observed here is warranted in future studies.
期刊介绍：
American Journal of Alzheimer''s Disease and other Dementias® (AJADD) is for professionals on the frontlines of Alzheimer''s care, dementia, and clinical depression--especially physicians, nurses, psychiatrists, administrators, and other healthcare specialists who manage patients with dementias and their families. This journal is a member of the Committee on Publication Ethics (COPE).
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