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



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.


Literacy 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.


  1. 1.
    Baggott, C., Dodd, M., Kennedy, C., Marina, N., Matthay, K. K., Cooper, B. A., & Miaskowski, C. (2010). Changes in children’s reports of symptom occurrence and severity during a course of myelosuppressive chemotherapy. Journal of Pediatric Oncology Nursing, 27(6), 307–315.Google Scholar
  2. 2.
    Hockenberry, M. J., Hooke, M. C., Gregurich, M., McCarthy, K., Sambuco, G., & Krull, K. (2010). Symptom clusters in children and adolescents receiving cisplatin, doxorubicin, or ifosfamide. Oncology Nursing Forum, 37(1), E16–E27.Google Scholar
  3. 3.
    Rodgers, C., Hooke, M. C., Ward, J., & Linder, L. A. (2016). Symptom clusters in children and adolescents with cancer. Seminars in Oncology Nursing, 32(4), 394–404.Google Scholar
  4. 4.
    Hockenberry, M. J., Hinds, P. S., Barrera, P., Bryant, R., Adams-McNeill, J., Hooke, C., Rasco-Baggott, C., Patterson-Kelly, K., Gattuso, J. S., & Manteuffel, B. (2003). Three instruments to assess fatigue in children with cancer: The child, parent and staff perspectives. Journal of Pain and Symptom Management, 25(4), 319–328.Google Scholar
  5. 5.
    Varni, J. W., Thissen, D., Stucky, B. D., Liu, Y., Magnus, B., He, J., et al. (2015). Item-level informant discrepancies between children and their parents on the PROMIS((R)) pediatric scales. Quality of Life Research, 24(8), 1921–1937.Google Scholar
  6. 6.
    Whaley, W. J., & Kibby, M. W. (1980). Word synthesis and beginning reading-achievement. Journal of Educational Research, 73(3), 132–138.Google Scholar
  7. 7.
    Conrad, N. J., Harris, N., & Williams, J. (2013). Individual differences in children’s literacy development: The contribution of orthographic knowledge. Reading and Writing, 26(8), 1223–1239.Google Scholar
  8. 8.
    Mitchell, A. M., & Brady, S. A. (2013). The effect of vocabulary knowledge on novel word identification. Annals of Dyslexia, 63(3–4), 201–216.Google Scholar
  9. 9.
    Rebok, G., Riley, A., Forrest, C., Starfield, B., Green, B., Robertson, J., & Tambor, E. (2001). Elementary school-aged children’s reports of their health: A cognitive interviewing study. Quality of Life Research, 10(1), 59–70.Google Scholar
  10. 10.
    Hicks, C. L., von Baeyer, C. L., Spafford, P. A., van Korlaar, I., & Goodenough, B. (2001). The faces pain scale-revised: Toward a common metric in pediatric pain measurement. Pain, 93(2), 173–183.Google Scholar
  11. 11.
    Dupuis, L. L., Taddio, A., Kerr, E. N., Kelly, A., & MacKeigan, L. (2006). Development and validation of the pediatric nausea assessment tool for use in children receiving antineoplastic agents. Pharmacotherapy, 26(9), 1221–1231.Google Scholar
  12. 12.
    Varni, J. W., Limbers, C. A., & Burwinkle, T. M. (2007). How young can children reliably and validly self-report their health-related quality of life? An analysis of 8591 children across age subgroups with the PedsQL (TM) 4.0 Generic Core Scales. Health and Quality of Life Outcomes, 5:1Google Scholar
  13. 13.
    Hutchinson, A. D., Pfeiffer, S. M., & Wilson, C. (2017). Cancer-related cognitive impairment in children. Curr Opin Support Palliat Care, 11(1), 70–75.Google Scholar
  14. 14.
    Lum, A., Wakefield, C. E., Donnan, B., Burns, M. A., Fardell, J. E., & Marshall, G. M. (2017). Understanding the school experiences of children and adolescents with serious chronic illness: A systematic meta-review. Child: Care, Health and Development, 43(5), 645–662.Google Scholar
  15. 15.
    Reardon, S. F., Valentino, R. A., Kalogrides, D., Shores, K. A., & Greenberg, E. H. (2013). Patterns and trends in racial academic chievement gaps among states, 1999–2011.Google Scholar
  16. 16.
    Paschall, K. W., Gershoff, E. T., & Kuhfeld, M. (2018). A two decade examination of historical race/ethnicity disparities in academic achievement by poverty status. Journal of Youth and Adolescence, 47(6), 1164–1177.Google Scholar
  17. 17.
    Reeve, B. B., McFatrich, M., Pinheiro, L. C., Weaver, M. S., Sung, L., Withycombe, J. S., et al. (2017). Eliciting the child’s voice in adverse event reporting in oncology trials: Cognitive interview findings from the pediatric patient-reported outcomes version of the common terminology criteria for adverse events initiative. Pediatric Blood Cancer, 64(3), e26261.Google Scholar
  18. 18.
    Reeve, B. B., Withycombe, J. S., Baker, J. N., Hooke, M. C., Lyons, J. C., Mowbray, C., et al. (2013). The first step to integrating the child’s voice in adverse event reporting in oncology trials: A content validation study among pediatric oncology clinicians. Pediatric Blood & Cancer, 60(7), 1231–1236.Google Scholar
  19. 19.
    Basch, E., Reeve, B. B., Mitchell, S. A., Clauser, S. B., Minasian, L. M., Dueck, A. C., et al. (2014). Development of the National Cancer Institute’s patient-reported outcomes version of the common terminology criteria for adverse events (PRO-CTCAE). Journal of the National Cancer Institute. Scholar
  20. 20.
    Dueck, A. C., Mendoza, T. R., Mitchell, S. A., Reeve, B. B., Castro, K. M., Rogak, L. J., et al. (2015). Validity and reliability of the US National cancer institute’s patient-reported outcomes version of the common terminology criteria for adverse events (PRO-CTCAE). JAMA Oncology, 1(8), 1051–1059.Google Scholar
  21. 21.
    Reeve, B. B., McFatrich, M., Pinheiro, L. C., Freyer, D. R., Basch, E. M., Baker, J. N., et al. (2017). Cognitive interview-based validation of the patient-reported outcomes version of the common terminology criteria for adverse events in adolescents with cancer. Journal of Pain and Symptom Management, 53(4), 759–766.Google Scholar
  22. 22.
    Wilkinson, G. S., & Robertson, G. J. (2006). Wide range achievement test-4 (WRAT-4). Lutz: Psychological Assessment Resources.Google Scholar
  23. 23.
    Food and Drug Administration. Guidance for industry patient-reported outcome measures: Use in medical product development to support labeling claims. (2009). Retrieved from
  24. 24.
    Pinheiro, L. C., McFatrich, M., Lucas, N., Walker, J. S., Withycombe, J. S., Hinds, P. S., et al. (2018). Child and adolescent self-report symptom measurement in pediatric oncology research: A systematic literature review. Quality of Life Research, 27(2), 291–319.Google Scholar
  25. 25.
    Matza, L. S., Patrick, D. L., Riley, A. W., Alexander, J. J., Rajmil, L., Pleil, A. M., et al. (2013). Pediatric patient-reported outcome instruments for research to support medical product labeling: Report of the ISPOR PRO good research practices for the assessment of children and adolescents task force. Value Health, 16(4), 461–479.Google Scholar
  26. 26.
    The Nation’s Report Card: 2015 mathematics & reading at Grade 12. National assessment of educational progress.Google Scholar
  27. 27.
    MacMillan, P. (2000). Simultaneous measurement of reading growth, gender, and relative-age effects: Many-faceted Rasch applied to CBM reading scores. Journal of Applied Measurement, 1(4), 393–408.Google Scholar
  28. 28.
    Anderson, V. A., Godber, T., Smibert, E., Weiskop, S., & Ekert, H. (2000). Cognitive and academic outcome following cranial irradiation and chemotherapy in children: A longitudinal study. British Journal of Cancer, 82(2), 255–262.Google Scholar
  29. 29.
    Robinson, K. E., Kuttesch, J. F., Champion, J. E., Andreotti, C. F., Hipp, D. W., Bettis, A., et al. (2010). A quantitative meta-analysis of neurocognitive sequelae in survivors of pediatric brain tumors. Pediatr Blood Cancer, 55(3), 525–531.Google Scholar
  30. 30.
    Lonnerblad, M., Lovio, R., Berglund, E., & van’t Hooft, I. (2017). Affected aspects regarding literacy and numeracy in children treated for brain tumors. Journal of Pediatric Oncology Nursing, 34(6), 397–405.Google Scholar
  31. 31.
    Krull, K. R., Hockenberry, M. J., Miketova, P., Carey, M., & Moore, I. M. (2013). Chemotherapy-related changes in central nervous system phospholipids and neurocognitive function in childhood acute lymphoblastic leukemia. Leukemia & Lymphoma, 54(3), 535–540.Google Scholar
  32. 32.
    Stehbens, J. A., & Kisker, C. T. (1984). Intelligence and achievement testing in childhood cancer: Three years postdiagnosis. Journal of Developmental and Behavioral Pediatrics, 5(4), 184–188.Google Scholar
  33. 33.
    Lewis, F. M., Perry, M. L., & Murdoch, B. E. (2013). Longitudinal language outcomes following intrathecal chemotherapy for acute lymphoblastic leukaemia. International Journal of Speech-Language Pathology, 15(2), 156–164.Google Scholar
  34. 34.
    Fryer, R. G., & Levitt, S. D. (2004). Understanding the black-white test score gap in the first two years of school. Review of Economics and Statistics, 86(2), 447–464.Google Scholar
  35. 35.
    Clotfelter, C. T., Ladd, H. F., & Vigdor, J. L. (2009). The academic achievement gap in grades 3 to 8. Review of Economics and Statistics, 91(2), 398–419.Google Scholar
  36. 36.
    Duncan, G. J., & Magnuson, K. A. (2005). Can family socioeconomic resources account for racial and ethnic test score gaps? Future of Children, 15(1), 35–54.Google Scholar

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

Personalised recommendations