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. 2025 Sep 8:e32041.
doi: 10.1002/pbc.32041. Online ahead of print.

Characterizing Difficulty and Life Disruption During B-Acute Lymphoblastic Leukemia Therapy From the Perspective of Parents: A Survey Study

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

Characterizing Difficulty and Life Disruption During B-Acute Lymphoblastic Leukemia Therapy From the Perspective of Parents: A Survey Study

Kellee N Parker et al. Pediatr Blood Cancer. .

Abstract

Purpose: Children with B-acute lymphoblastic leukemia (B-ALL) treated in resource-intensive settings have a high likelihood of cure, but therapy is long, burdensome, and associated with substantial toxicities. Understanding parents' perceptions of the most disruptive and difficult aspects of B-ALL treatment is critical to future improvements in care. We aimed to understand which child side effects, chemotherapeutic agents, and aspects of leukemia care are rated difficult or disruptive by parents, and variations based on parent or child characteristics.

Methods: Parents of children (1-19 years) currently or previously treated for B-ALL who are members of the Momcology pediatric cancer support and advocacy organization were invited to complete an online survey on difficult and disruptive aspects associated with their child's diagnosis. Data were analyzed descriptively, and inferential statistical tests evaluated characteristic-based differences.

Results: Parents of 442 children completed the survey. Nausea/vomiting was the most commonly reported difficult side effect during pre-maintenance therapy (55.4%), followed by decreased energy (41.4%) and neuropathy (40.7%). Mood changes were the most difficult side effect during maintenance therapy (29.3%). The extent of difficulty associated with each side effect reported was high. Most parents (79.6%) rated oral corticosteroids as the most difficult chemotherapeutic agent. The components of care most difficult and disruptive were unplanned hospital visits (79.9%) and compromised immunity (76.9%). Parent-rated difficulties significantly varied by child age at diagnosis.

Conclusions: Parents of children with B-ALL report substantial child and family difficulties that are directly attributable to leukemia treatment. These findings should inform areas of investigation for optimizing treatment regimens and supportive care.

Keywords: B‐acute lymphoblastic leukemia; advocacy; parental perspectives; supportive care; survey; toxicity.

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References

    1. E. Steliarova‐Foucher, M. Colombet, L. A. G. Ries, et al., “International Incidence of Childhood Cancer, 2001–10: A Population‐Based Registry Study,” 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. C. Vercasson, P. Auquier, G. Michel, et al., “Quality of Life in Parents of Childhood Leukemia Survivors. A French Childhood Cancer Survivor Study for Leukemia Study,” Pediatric Blood & Cancer 67, no. 10 (2020): e28419, https://doi.org/10.1002/pbc.28419.
    1. E. van der Plas, W. Qiu, B. J. Nieman, et al., “Sex‐Specific Associations between Chemotherapy, Chronic Conditions, and Neurocognitive Impairment in Acute Lymphoblastic Leukemia Survivors: A Report from the Childhood Cancer Survivor Study,” JNCI: Journal of the National Cancer Institute 113, no. 5 (2021): 588–596, https://doi.org/10.1093/jnci/djaa136.
    1. N. Rensen, L. M. H. Steur, M. A. Grootenhuis, et al., “Parental Functioning During Maintenance Treatment for Childhood Acute Lymphoblastic Leukemia: Effects of Treatment Intensity and Dexamethasone Pulses,” Pediatric Blood & Cancer 67, no. 11 (2020): e28697, https://doi.org/10.1002/pbc.28697.

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