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17-01-2019

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

Auteurs: Janice S. Withycombe, Molly McFatrich, Laura Pinheiro, Pamela S. Hinds, Frank G. Keller, Justin N. Baker, Jenny W. Mack, Lillian Sung, Mia K. Waldron, Bryce B. Reeve

Gepubliceerd in: Quality of Life Research | Uitgave 7/2019

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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.
Literatuur
1.
go back to reference 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.CrossRefPubMed 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.CrossRefPubMed
2.
go back to reference 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.CrossRefPubMed 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.CrossRefPubMed
3.
go back to reference 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.CrossRefPubMed 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.CrossRefPubMed
4.
go back to reference 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.CrossRefPubMed 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.CrossRefPubMed
5.
go back to reference 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.CrossRefPubMedPubMedCentral 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.CrossRefPubMedPubMedCentral
6.
go back to reference Whaley, W. J., & Kibby, M. W. (1980). Word synthesis and beginning reading-achievement. Journal of Educational Research, 73(3), 132–138.CrossRef Whaley, W. J., & Kibby, M. W. (1980). Word synthesis and beginning reading-achievement. Journal of Educational Research, 73(3), 132–138.CrossRef
7.
go back to reference 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.CrossRef 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.CrossRef
8.
go back to reference Mitchell, A. M., & Brady, S. A. (2013). The effect of vocabulary knowledge on novel word identification. Annals of Dyslexia, 63(3–4), 201–216.CrossRefPubMed Mitchell, A. M., & Brady, S. A. (2013). The effect of vocabulary knowledge on novel word identification. Annals of Dyslexia, 63(3–4), 201–216.CrossRefPubMed
9.
go back to reference 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.CrossRefPubMed 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.CrossRefPubMed
10.
go back to reference 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.CrossRefPubMed 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.CrossRefPubMed
11.
go back to reference 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.CrossRefPubMed 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.CrossRefPubMed
12.
go back to reference 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, 5:1CrossRefPubMedPubMedCentral 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, 5:1CrossRefPubMedPubMedCentral
13.
go back to reference Hutchinson, A. D., Pfeiffer, S. M., & Wilson, C. (2017). Cancer-related cognitive impairment in children. Curr Opin Support Palliat Care, 11(1), 70–75.PubMed Hutchinson, A. D., Pfeiffer, S. M., & Wilson, C. (2017). Cancer-related cognitive impairment in children. Curr Opin Support Palliat Care, 11(1), 70–75.PubMed
14.
go back to reference 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. 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.
15.
go back to reference 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. 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.
16.
go back to reference 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.CrossRefPubMedPubMedCentral 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.CrossRefPubMedPubMedCentral
17.
go back to reference 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.CrossRef 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.CrossRef
18.
go back to reference 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.CrossRef 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.CrossRef
20.
go back to reference 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.CrossRefPubMedPubMedCentral 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.CrossRefPubMedPubMedCentral
21.
go back to reference 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.CrossRefPubMedPubMedCentral 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.CrossRefPubMedPubMedCentral
22.
go back to reference Wilkinson, G. S., & Robertson, G. J. (2006). Wide range achievement test-4 (WRAT-4). Lutz: Psychological Assessment Resources. Wilkinson, G. S., & Robertson, G. J. (2006). Wide range achievement test-4 (WRAT-4). Lutz: Psychological Assessment Resources.
24.
go back to reference 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.CrossRefPubMed 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.CrossRefPubMed
25.
go back to reference 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.CrossRefPubMed 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.CrossRefPubMed
26.
go back to reference The Nation’s Report Card: 2015 mathematics & reading at Grade 12. National assessment of educational progress. The Nation’s Report Card: 2015 mathematics & reading at Grade 12. National assessment of educational progress.
27.
go back to reference 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.PubMed 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.PubMed
28.
go back to reference 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.CrossRefPubMedPubMedCentral 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.CrossRefPubMedPubMedCentral
29.
go back to reference 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.CrossRefPubMed 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.CrossRefPubMed
30.
go back to reference 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.CrossRefPubMed 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.CrossRefPubMed
31.
go back to reference 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.CrossRef 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.CrossRef
32.
go back to reference 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.CrossRefPubMed 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.CrossRefPubMed
33.
go back to reference 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.CrossRefPubMed 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.CrossRefPubMed
34.
go back to reference 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.CrossRef 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.CrossRef
35.
go back to reference 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.CrossRef 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.CrossRef
36.
go back to reference 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.CrossRefPubMed 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.CrossRefPubMed
Metagegevens
Titel
The association of age, literacy, and race on completing patient-reported outcome measures in pediatric oncology
Auteurs
Janice S. Withycombe
Molly McFatrich
Laura Pinheiro
Pamela S. Hinds
Frank G. Keller
Justin N. Baker
Jenny W. Mack
Lillian Sung
Mia K. Waldron
Bryce B. Reeve
Publicatiedatum
17-01-2019
Uitgeverij
Springer International Publishing
Gepubliceerd in
Quality of Life Research / Uitgave 7/2019
Print ISSN: 0962-9343
Elektronisch ISSN: 1573-2649
DOI
https://doi.org/10.1007/s11136-019-02109-9

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