Early Parental Knowledge of Late Effect Risks in Children with Cancer

Background/objectives: Despite the pervasiveness of late effects in childhood cancer survivors, many parents feel inadequately informed about their child's risks. We assessed early parental knowledge of risks of late effects and predictors of increased knowledge.

Design/methods: Parents of children receiving cancer treatment at Dana-Farber/Boston Children's Cancer and Blood Disorders Center were surveyed about their knowledge of their child's likelihood of eight late effects. Individual risk for each late effect (yes/no) was assessed using the Children's Oncology Group's Long-Term Follow-Up Guidelines v5 as a reference. Descriptive statistics were used to summarize knowledge scores; ordinal logistic regression was used to identify predictors of higher knowledge.

Results: Of 96 parent participants, 11 (11.46%) correctly identified all of their child's risks for the eight late effects. Five of eight was the median number of correctly identified late effect risks. Among 21 parents whose children were at risk for ototoxicity, 95% correctly identified this risk. Conversely, parents of at-risk children were less knowledgeable about risks of secondary malignancy (63% correct identification, of N = 94 at risk), cardiac toxicity (61%; N = 71), neurocognitive impairment (56%; N = 63), and infertility (28%; N = 61). Ordinal logistic regression analysis identified no significant differences in parental knowledge of late effect risks by any factors evaluated.

Conclusions: Gaps in parental knowledge of potential late effects of childhood cancer treatment emerge early in a child's care, and parents are more knowledgeable about some late effects, such as ototoxicity, than others, such as infertility. As no child- or parent-specific factors were associated with increased knowledge of late effect risks, interventions must be applied broadly.