Parental needs for information related to neurocognitive late effects from pediatric cancer and its treatment

Background. Parents' needs for information about neurocognitive late effects (NCLE) associated with cancer treatment may differ as to the preferred source, format, timing, and amount of information about potential NCLE from treatment. Parental characteristics, treatment variables, and other risk factors may also modulate the needs for information about NCLE. Procedure. A total of 90 parents completed a series of questionnaires related to their perceived knowledge of NCLE and need for further information about NCLE, coping style, stress, perceived risk for NCLE, and information related to their child's diagnosis and treatment. Results. These findings indicate that although parents report feeling knowledgeable about NCLE, they continue to have a need for further information. Many parents would prefer multi-modal presentation of this material, but they do not have a clear consensus about the optimal time to first discuss this risk. Parents who reported higher levels of emotional distress expressed a preference to receive information earlier. Stepwise regression analyses revealed that parents of children who received cranial radiation reported being well informed about NCLE, whereas parents of children who received chemotherapy reported wanting more information about NCLE. Conclusions. It is important to recognize the high level of need for information about potential NCLE in caregivers of children with cancer. Further research is needed to understand how to tailor the timing and mode of presentation to individual families.