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Assessing how well educational supports map on to neurocognitive needs in high-risk pediatric populations: Developing a tool for examining alignment

Published online by Cambridge University Press:  22 October 2025

Lisa A. Jacobson*
Affiliation:
Center for Neuropsychological and Psychological Assessment, Kennedy Krieger Institute, Baltimore, USA Department of Psychiatry and Behavioral Science, Johns Hopkins School of Medicine, Baltimore, USA
Rachel A. Northrup
Affiliation:
Center for Neuropsychological and Psychological Assessment, Kennedy Krieger Institute, Baltimore, USA
Lisa B. Carey
Affiliation:
Center for Neuropsychological and Psychological Assessment, Kennedy Krieger Institute, Baltimore, USA
Kathy Ruble
Affiliation:
Division of Pediatric Oncology, Johns Hopkins School of Medicine, Baltimore, MD, USA
*
Corresponding author: Lisa A. Jacobson; Email: jacobson@kennedykrieger.org

Abstract

Objective:

Pediatric cancer survivors are at increased risk for neurocognitive challenges that can impact academic achievement and attainment. Educational supports via accommodations or special education can promote better outcomes for these youth; however, barriers often stand in the way of appropriate supports being implemented. Neuropsychological evaluation reports highlight a child’s neurocognitive strengths and needs, but an additional tool to assist parents and educators in understanding the extent to which a child’s neurocognitive needs are addressed by their educational supports may help ensure appropriate supports.

Method:

The present study piloted a novel neurocognitive needs-to-educational supports alignment rubric in a referred sample of pediatric survivors of cancer, bone marrow transplant, and cancer predisposition syndromes (i.e., neurofibromatosis).

Results:

Inter-rater reliability across disciplines was satisfactory. Among school-aged patients who were attending public school (n = 90), mean needs-to-supports alignment was 20.3%, indicating that on average, referred patients were receiving minimal classroom supports addressing identified neurocognitive needs. Among the 42.9% with a formal support plan, proportion of needs met by a support rose to only 47%, indicating that in spite of some recognition of patient needs, supports remain inadequate to the breadth of patient needs.

Conclusions:

This alignment tool can assist parents and educators in better tailoring a child’s educational supports to meet their needs, serve as a communication tool between healthcare and education teams, and provide a quantitative metric for evaluating educationally focused interventions (e.g., school liaison programming) in youth with a variety of chronic health conditions and developmental disabilities.

Information

Type
Research Article
Copyright
© The Author(s), 2025. Published by Cambridge University Press on behalf of International Neuropsychological Society

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References

Annett, R. D., Patel, S. K., & Phipps, S. (2015). Monitoring and assessment of neuropsychological outcomes as a standard of care in pediatric oncology. Pediatric Blood & Cancer, 62(S5), S460S513.10.1002/pbc.25749CrossRefGoogle ScholarPubMed
Bethell, C. D., Kogan, M. D., Strickland, B. B., Schor, E. L., Robertson, J., & Newacheck, P. W. (2011). A national and state profile of leading health problems and health care quality for US children: Key insurance disparities and across-state variations. Academic Pediatrics, 11(3), S22S33.10.1016/j.acap.2010.08.011CrossRefGoogle ScholarPubMed
Castellino, S. M., Ullrich, N. J., Whelen, M. J., & Lange, B. J. (2014). Developing interventions for cancer-related cognitive dysfunction in childhood cancer survivors. JNCI Journal of the National Cancer Institute, 106(8), dju186.10.1093/jnci/dju186CrossRefGoogle ScholarPubMed
Chambers, M. A., Miller, D. T., & Ullrich, N. J. (2018). School liaison program supporting children with neurofibromatosis type 1: A model of care for children with chronic disease. Genetics in Medicine, 20(7), 785788.10.1038/gim.2017.177CrossRefGoogle Scholar
Champaloux, S. W., & Young, D. R. (2015). Childhood chronic health conditions and educational attainment: A social ecological approach. Journal of Adolescent Health, 56(1), 98105.10.1016/j.jadohealth.2014.07.016CrossRefGoogle ScholarPubMed
Cheung, L. L. T., Wakefield, C. E., Ellis, S. J., Mandalis, A., Frow, E., & Cohn, R. J. (2014). Neuropsychology reports for childhood brain tumor survivors: Implementation of recommendations at home and school. Pediatric Blood & Cancer, 61(6), 10801087.10.1002/pbc.24940CrossRefGoogle ScholarPubMed
Cheung, Y. T., & Krull, K. R. (2015). Neurocognitive outcomes in long-term survivors of childhood acute lymphoblastic leukemia treated on contemporary treatment protocols: A systematic review. Neuroscience and Biobehavioral Reviews, 53, 108120.10.1016/j.neubiorev.2015.03.016CrossRefGoogle ScholarPubMed
Crump, C., Rivera, D., London, R., Landau, M., Erlendson, B., & Rodriguez, E. (2013). Chronic health conditions and school performance among children and youth. Annals of Epidemiology, 23(4), 179184.10.1016/j.annepidem.2013.01.001CrossRefGoogle ScholarPubMed
Geoffray, M.-M., Robinson, L., Ramamurthy, K., Manderson, L., O’Flaherty, J., Lehtonen, A., Tordjman, S., Green, J., Vassallo, G., & Garg, S. (2021). Predictors of cognitive, behavioural and academic difficulties in NF1. Journal of Psychiatric Research, 140, 545550.10.1016/j.jpsychires.2021.06.002CrossRefGoogle ScholarPubMed
Gummersall, T., Skaczkowski, G., & Wilson, C. (2020). Childhood cancer, age at diagnosis and educational attainment: A meta-analysis. Critical Reviews in Oncology/Hematology, 145, 102838.10.1016/j.critrevonc.2019.102838CrossRefGoogle ScholarPubMed
Gutmann, D. H., Ferner, R. E., Listernick, R. H., Korf, B. R., Wolters, P. L., & Johnson, K. J. (2017). Neurofibromatosis type 1. Nature Reviews Disease Primers, 3(1), 17004.10.1038/nrdp.2017.4CrossRefGoogle ScholarPubMed
Hinton, D., & Kirk, S. (2015). Teachers’ perspectives of supporting pupils with long-term health conditions in mainstream schools: A narrative review of the literature. Health & Social Care in the Community, 23(2), 107120.10.1111/hsc.12104CrossRefGoogle Scholar
Hou, Y., Zong, X., Wu, X., Liu, D., Wolters, P. L., Janusz, J., Walsh, K. S., Morris, S. M., Payne, J. M., Pride, N., Garg, S., Robinson, L., & Stavinoha, P. L. (2025). Academic achievement of children with neurofibromatosis type 1. Pediatrics, 155(2), e2024067016.10.1542/peds.2024-067016CrossRefGoogle ScholarPubMed
Hyman, S. L., Shores, A., & North, K. N. (2005). The nature and frequency of cognitive deficits in children with neurofibromatosis type 1. Neurology, 65(7), 10371044.10.1212/01.wnl.0000179303.72345.ceCrossRefGoogle ScholarPubMed
Institute of Medicine. (2012). Living well with chronic illness: A call for public health action. The National Academies Press.Google Scholar
IRIS Center. (2025). Accommodations: Instructional and testing supports for students with disabilities. https://iris.peabody.vanderbilt.edu/module/acc/ Google Scholar
Jacobson, L. A., Paré-Blagoev, E. J., & Ruble, K. (2020). Barriers to schooling in survivorship: The role of neuropsychological assessment. JCO Oncology Practice, 16(12), e1516e1523.10.1200/OP.20.00549CrossRefGoogle ScholarPubMed
Kirkpatrick, K. M. (2020). Adolescents with chronic medical conditions and high school completion: The importance of perceived school belonging. Continuity in Education, 1(1), 5063.10.5334/cie.5CrossRefGoogle ScholarPubMed
Klassen, A. F., Anthony, S. J., Khan, A., Sung, L., & Klaassen, R. (2011). Identifying determinants of quality of life of children with cancer and childhood cancer survivors: A systematic review. Supportive Care in Cancer, 19(9), 12751287.10.1007/s00520-011-1193-xCrossRefGoogle ScholarPubMed
Kline, C. N., & Mueller, S. (2020). Neurocognitive outcomes in children with brain tumors. Seminars in Neurology, 40(3), 315321.Google ScholarPubMed
Lansford, J. E., Dodge, K. A., Pettit, G. S., & Bates, J. E. (2016). A public health perspective on school dropout and adult outcomes: A prospective study of risk and protective factors from age 5 to 27 years. Journal of Adolescent Health, 58(6), 652658.10.1016/j.jadohealth.2016.01.014CrossRefGoogle ScholarPubMed
Liu, W., Cheung, Y. T., Conklin, H. M., Jacola, L. M., Srivastava, D. K., Nolan, V. G., Zhang, H., Gurney, J. G., Huang, I.-C., Robison, L. L., Pui, C.-H., Hudson, M. M., & Krull, K. R. (2018). Evolution of neurocognitive function in long-term survivors of childhood acute lymphoblastic leukemia treated with chemotherapy only. Journal of Cancer Survivorship, 12(3), 398406.10.1007/s11764-018-0679-7CrossRefGoogle ScholarPubMed
Lum, A., Wakefield, C. E., Donnan, B., Burns, M. A., Fardell, J. E., Jaffe, A., Kasparian, N. A., Kennedy, S. E., Leach, S. T., Lemberg, D. A., & Marshall, G. M. (2019). School students with chronic illness have unmet academic, social, and emotional school needs. School Psychology, 34(6), 627636.10.1037/spq0000311CrossRefGoogle ScholarPubMed
Maryland State Department of Education. (2024). Maryland assessment, accessibility, and accommodations manual. Maryland State Department of Education.Google Scholar
Marzi, G., Balzano, M., & Marchiori, D. (2024). K-Alpha calculator–Krippendorff’s Alpha calculator: A user-friendly tool for computing Krippendorff’s Alpha inter-rater reliability coefficient. MethodsX, 12, 102545.10.1016/j.mex.2023.102545CrossRefGoogle ScholarPubMed
McKinley Yoder, C. L., & Cantrell, M. A. (2019). Childhood disability and educational outcomes: A systematic review. Journal of Pediatric Nursing, 45, 3750.10.1016/j.pedn.2019.01.003CrossRefGoogle ScholarPubMed
Miller, G. F., Coffield, E., Leroy, Z., & Wallin, R. (2016). Prevalence and costs of five chronic conditions in children. The Journal of School Nursing, 32(5), 357364.10.1177/1059840516641190CrossRefGoogle ScholarPubMed
Mitby, P. A., Robison, L. L., Whitton, J. A., Zevon, M. A., Gibbs, I. C., Tersak, J. M., Meadows, A. T., Stovall, M., Zeltzer, L. K., Mertens, A. C. (2003). Utilization of special education services and educational attainment among long-term survivors of childhood cancer: A report from the childhood cancer survivor study. Cancer, 97(4), 11151126.10.1002/cncr.11117CrossRefGoogle Scholar
Moore, I. M., Hockenberry, M. J., Anhalt, C., McCarthy, K., & Krull, K. R. (2012). Mathematics intervention for prevention of neurocognitive deficits in childhood leukemia. Pediatric Blood & Cancer, 59(2), 278284.10.1002/pbc.23354CrossRefGoogle ScholarPubMed
Palmer, S. L. (2008). Neurodevelopmental impact on children treated for medulloblastoma: A review and proposed conceptual model. Developmental Disabilities Research Reviews, 14(3), 203210.10.1002/ddrr.32CrossRefGoogle ScholarPubMed
Parrillo, E., Perrin, N., Ruble, K., Paré-Blagoev, E. J., & Jacobson, L. A. (2023). Developing a tool for measuring parent knowledge and barriers to supportive school integration after diagnosis of childhood cancer. Journal of Pediatric Hematology/Oncology Nursing, 40(4), 217225.10.1177/27527530221140068CrossRefGoogle ScholarPubMed
Perrin, J. M., Bloom, S. R., & Gortmaker, S. L. (2007). The increase of childhood chronic conditions in the United States. JAMA, 297(24), 2755.10.1001/jama.297.24.2755CrossRefGoogle ScholarPubMed
Phillips, S. M., Padgett, L. S., Leisenring, W. M., Stratton, K. K., Bishop, K., Krull, K. R., Alfano, C. M., Gibson, T. M., de Moor, J. S., Hartigan, D. B., Armstrong, G. T., Robison, L. L., Rowland, J. H., Oeffinger, K. C., & Mariotto, A. B. (2015). Survivors of childhood cancer in the United States: Prevalence and burden of morbidity. Cancer Epidemiology, Biomarkers & Prevention, 24(4), 653663.10.1158/1055-9965.EPI-14-1418CrossRefGoogle ScholarPubMed
Pritchard, A. E., Koriakin, T., Carey, L., Bellows, A., Jacobson, L., & Mahone, E. M. (2016). Academic testing accommodations for ADHD: Do they help? Learning Disabilities: A Multidisciplinary Journal, 21(2), 6778.Google ScholarPubMed
Robinson, M., Lazar, M. F., Zarabba, J. M., & Gold, M. (2025). School psychologists’ perceptions of the effectiveness of neuropsychological evaluation reports. Applied Neuropsychology: Child, 14(3), 290299.10.1080/21622965.2023.2292785CrossRefGoogle ScholarPubMed
Ruble, K., Paré-Blagoev, J., Cooper, S., Martin, A., & Jacobson, L. A. (2019). Parent perspectives on oncology team communication regarding neurocognitive impacts of cancer therapy and school reentry. Pediatric Blood & Cancer, 66(1), e27427.10.1002/pbc.27427CrossRefGoogle ScholarPubMed
Schmitt, M. B., Justice, L. M., Logan, J. A. R., Schatschneider, C., & Bartlett, C. W. (2014). Do the symptoms of language disorder align with treatment goals? An exploratory study of primary-grade students’ IEPs. Journal of Communication Disorders, 52, 99110.10.1016/j.jcomdis.2014.06.002CrossRefGoogle Scholar
The Lancet Public Health. (2020). Education: A neglected social determinant of health. The Lancet Public Health, 5(7), e361.10.1016/S2468-2667(20)30144-4CrossRefGoogle Scholar
Torres Nupan, M. M., Velez Van Meerbeke, A., López Cabra, C. A., & Herrera Gomez, P. M. (2017). Cognitive and behavioral disorders in children with neurofibromatosis type 1. Frontiers in Pediatrics, 5, 227.10.3389/fped.2017.00227CrossRefGoogle ScholarPubMed
Wiener, L., Kazak, A. E., Noll, R. B., Patenaude, A. F., & Kupst, M. J. (2015). Standards for the psychosocial care of children with cancer and their families: An introduction to the special issue. Pediatric Blood & Cancer, 62(S5), S419S424.10.1002/pbc.25675CrossRefGoogle ScholarPubMed
Zablotsky, B., Ng, A., Black, L., & Blumberg, S. (2023). Diagnosed developmental disabilities in children aged 3 – 17 years: United States, 2019 – 2021. National Center for Health Statistics (U.S.). https://doi.org/10.15620/cdc:129520 CrossRefGoogle ScholarPubMed