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. 2026 Apr;73(4):e70156.
doi: 10.1002/1545-5017.70156. Epub 2026 Jan 23.

Characterizing Parental Concerns About Lasting Impacts of Treatment in Children With B-Acute Lymphoblastic Leukemia

Kellee N Parker  1 , Sarah W Alexander  2 , Lisa M Jacola  3 , Kimberly A Buff  4 , Kyobin Hwang  5 , Elham Hashemi  6 , Gregory Stoddard  7 , Lindsay A Jibb  6   8
Affiliations

Characterizing Parental Concerns About Lasting Impacts of Treatment in Children With B-Acute Lymphoblastic Leukemia

Kellee N Parker et al. Pediatr Blood Cancer. 2026 Apr.

Abstract

Background: B-acute lymphoblastic leukemia (B-ALL) is the most common pediatric cancer, and while most children in high-resource settings are cured, therapy carries risks for long-term toxicities. Understanding parents' concerns about these late effects is essential to guide anticipatory support and inform evolving therapeutic approaches.

Procedure: In partnership with the national patient advocacy organization, Momcology, parents of children diagnosed with ALL between the ages 1 and 19 years completed an online survey. Parents selected up to five concerning potential late effects, rated the level of intensity of concern, and provided open-text responses. Quantitative analyses examined associations with child and parent factors, and qualitative responses were analyzed using directed content analysis.

Results: The survey was completed by 442 parents of children with B-ALL. The most frequently cited concerns were neurocognitive deficits (55%), secondary cancers (49%), mental health changes (36%), cardiotoxicity (31%), and infertility (30%). Concern for neurocognitive deficits persisted during and after therapy and was of greater concern among parents of younger children compared with older children (58% vs. 41%; p = 0.006). Concerns about neurocognitive effects correlated with concern for mental health and social changes (RR 1.86, 95% CI 1.40-2.47, RR 1.43, 1.03-1.98). Open-text responses for all late effects of concern indicated enduring worry and impacts on family anxiety, daily life, and children's future opportunities.

Conclusions: Parents of children with B-ALL report substantial, persistent concern about late effects, particularly neurocognitive impairment. Findings underscore the need for information and guidance for parents of children with ALL about late effects and the importance of integration of parent perspectives in defining ALL research priorities.

Keywords: B‐acute lymphoblastic leukemia; advocacy; late effects; parental perspectives; survey; survivorship; toxicity.

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References

    1. L. Gore, “What Are the Long‐Term Complications of Pediatric ALL Treatments and How Can They Be Mitigated? Perspectives on Long‐Term Consequences of Curative Treatment in Childhood ALL,” Best Practice & Research, Clinical Haematology 35, no. 4 (2022): 101403.
    1. E. Steliarova‐Foucher, M. Colombet, L. A. G. Ries, et al., “International Incidence of Childhood Cancer, 2001–10: A Population‐Based Registry Study,” The Lancet Oncology 18, no. 6 (2017): 719–731, https://doi.org/10.1016/S1470‐2045(17)30186‐9.
    1. R. L. Siegel, K. D. Miller, N. S. Wagle, and A. Jemal, “Cancer Statistics, 2023,” CA: A Cancer Journal for Clinicians 73, no. 1 (2023): 17–48, https://doi.org/10.3322/caac.21763.
    1. G. T. Armstrong, T. Kawashima, W. Leisenring, et al., “Aging and Risk of Severe, Disabling, Life‐Threatening, and Fatal Events in the Childhood Cancer Survivor Study,” Journal of Clinical Oncology 32, no. 12 (2014): 1218–1227, https://doi.org/10.1200/JCO.2013.51.1055.
    1. K. C. Oeffinger, A. C. Mertens, C. A. Sklar, et al., “Chronic Health Conditions in Adult Survivors of Childhood Cancer,” New England Journal of Medicine 355, no. 15 (2006): 1572–1582, https://doi.org/10.1056/NEJMsa060185.

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