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The association of age, literacy, and race on completing patient-reported outcome measures in pediatric oncology

  • Janice S. WithycombeEmail author
  • Molly McFatrich
  • Laura Pinheiro
  • Pamela S. Hinds
  • Frank G. Keller
  • Justin N. Baker
  • Jenny W. Mack
  • Lillian Sung
  • Mia K. Waldron
  • Bryce B. Reeve
Article

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.

Keywords

Literacy Pediatric Patient-reported outcomes Cancer 

Notes

Acknowledgements

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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Copyright information

© Springer Nature Switzerland AG 2019

Authors and Affiliations

  • Janice S. Withycombe
    • 1
    Email author
  • Molly McFatrich
    • 2
  • Laura Pinheiro
    • 3
  • Pamela S. Hinds
    • 4
  • Frank G. Keller
    • 5
  • Justin N. Baker
    • 6
  • Jenny W. Mack
    • 7
  • Lillian Sung
    • 8
  • Mia K. Waldron
    • 4
  • Bryce B. Reeve
    • 2
  1. 1.Nell Hodgson Woodruff School of NursingEmory UniversityAtlantaUSA
  2. 2.Center for Health Measurement, Department of Population Health SciencesDuke University School of MedicineDurhamUSA
  3. 3.Division of General Internal MedicineWeill Cornell MedicineNew YorkUSA
  4. 4.Children’s National Health SystemWashingtonUSA
  5. 5.Aflac Cancer and Blood Disorders CenterChildren’s Healthcare of AtlantaAtlantaUSA
  6. 6.Saint Jude Children’s Research HospitalMemphisUSA
  7. 7.Dana-Farber, Harvard Cancer CenterBostonUSA
  8. 8.Hospital for Sick ChildrenTorontoCanada

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