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

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.

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.

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.

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.