The association of age, literacy, and race on completing patient-reported outcome measures in pediatric oncology
Age is often used to determine when children can begin completing patient-reported outcome (PRO) instruments or transition to adult instruments. This study’s purpose was to determine relationships between literacy, age, and race and their influence on a child’s ability to understand and complete a PRO instrument.
The Wide Range Achievement Test was used to evaluate literacy in children and young adults with cancer, participating in a cognitive interview for the Pediatric PRO-CTCAE instrument. 140 participants (7–20 years) were recruited from 8 sites. Logistic regression and multivariable liner regression were used to examine relationships among key variables.
Higher literacy scores were significantly associated with fewer PRO-CTCAE items being identified as “hard to understand” (p = 0.017). Literacy scores increased with age, but older participants were more likely to fall behind expected reading levels compared with US norms. A 1-year increase in age was associated with a 19% increase in the likelihood for being below the expected WRAT word reading score (OR 1.19; 95% CI 1.06–1.33, p = 0.003). No associations were found between race and literacy.
Wide variations in literacy were noted across age groups. All participants were able to complete the Pediatric PRO-CTCAE, although most 7 year olds (63%) required reading assistance. Those with lower literacy skills were able to understand items suggesting that multiple factors may be involved in comprehension (developmental stage, concentration, vocabulary, or prior health experiences). Risk for falling below expected literacy levels increased with age implying a need for literacy consideration for cancer patients.
KeywordsLiteracy Pediatric Patient-reported outcomes Cancer
This research was for funded by Alex’s Lemonade Stand Foundation for Childhood Cancer (PI: Withycombe) and by the National Cancer Institute of the National Institutes of Health under Award Number R01CA175759 (PIs: Reeve and Hinds). The use of REDCap for this project was supported by the Clinical and Translational Science Award program (within the NIH), through Grant Award Number UL1TR002489. The content is the responsibility of the authors and does not necessarily represent the views of Alex’s Lemonade Stand Foundation or the National Institutes of Health.
Compliance with ethical standards
Conflict of interest
The authors declare that they have no conflict of interest.
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