Patient reported outcome (PRO) measures are needed to fully understand the subjective experiences of children during cancer treatment. Literacy skills are necessary for children to independently complete PRO instruments. The association of age, race, and literacy in school-aged children undergoing cancer therapy is not well-documented, and it is unknown how these factors impact the child’s ability to understand and complete PROs. Age is currently used to decide when patient-reported outcome measures can be collected.
The purpose of this research study was to examine the relationship between literacy and a child’s age, race, and ability to understand and complete a new instrument—the Pediatric PRO-Common Terminology Criteria for Adverse Events (CTCAE). Children aged 7-20 years, from 8 sites, participated in cognitive interviews as part of the validation process for the Pediatric PRO-CTCAE. The Word Reading component of the Wide Range Achievement Test (WRAT) was used to evaluate literacy. Logistic regression and multivariable linear regression were used to examine relationships between variables. Wide variations in literacy skills were noted across all ages in the 140 participants. Most 7 year olds (63%) required help with reading, although words were often recognized when stated out loud. A one-unit increase in WRAT score, which equates to an increasing higher literacy level, was associated with a decline in words/questions identified by the children as “hard to understand” (p=0.017). Age and literacy were highly correlated (B -0.804, p=0.045). Although literacy scores increased with age, older children (16-20 years) were more likely to fall behind the expected literacy level. Children, even those with lower literacy scores, were able to complete the PRO-CTCAE, indicating that a variety of factors may influence comprehension (i.e., child’s developmental stage, prior health experiences, vocabulary). There was no significant association between race and literacy in this study. The findings from this study demonstrate that age is not always an accurate proxy for literacy level, and therefore it is recommended that special consideration be given to literacy in conjunction with PRO use in children with cancer.