Janice S Withycombe1, Molly McFatrich2, Laura Pinheiro3, Pamela S Hinds4, Frank G Keller5, Justin N Baker6, Jenny W Mack7, Lillian Sung8, Mia K Waldron4, Bryce B Reeve2. 1. Nell Hodgson Woodruff School of Nursing, Emory University, 1520 Clifton Road, NE, Atlanta, GA, USA. jwithycombe@emory.edu. 2. Center for Health Measurement, Department of Population Health Sciences, Duke University School of Medicine, Durham, NC, USA. 3. Division of General Internal Medicine, Weill Cornell Medicine, New York, NY, USA. 4. Children's National Health System, 111 Michigan Ave., N.W., Office M7655, Washington, D.C., 20010, USA. 5. Aflac Cancer and Blood Disorders Center, Children's Healthcare of Atlanta, 2015 Uppergate Drive, ECC 436, Atlanta, GA, 30322, USA. 6. Saint Jude Children's Research Hospital, 262 Danny Thomas Place MS 260, Memphis, TN, 38105-3678, USA. 7. Dana-Farber, Harvard Cancer Center, 44 Binney Street, Boston, MA, 02115, USA. 8. Hospital for Sick Children, 555 University Avenue, Toronto, ON, M5G 1X8, Canada.
Abstract
PURPOSE: 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. METHODS: 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. RESULTS: 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. CONCLUSIONS: 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.
PURPOSE: 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. METHODS: 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. RESULTS: 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. CONCLUSIONS: 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 cancerpatients.
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