Researchers from the neuropsychology department and pediatric hematology/oncology department at Rhode Island Hospital and its Hasbro Children's Hospital have published the results of their findings on parents' needs for information about the neurocognitive late effects (NCLE) of treatment for childhood cancer.
The findings indicate that although parents report feeling knowledgeable about NCLE, they continue to need further information. The study was first published online for the journal Pediatric Blood & Cancer, and appears in the Feb. 2009 print edition.
The incidence of pediatric cancer has increased, however, the mortality rates of childhood cancer have decreased, resulting in more survivors. Along with that improvement comes what is known as "late effects" associated with the treatment children with cancer receive. These effects are often chronic problems, such as memory and concentration problems or difficulty in learning, problem solving, or processing and organizing information that can develop two or more years after treatment is completed. Fifty to 60 percent of all childhood cancer survivors are at risk for NCLE. In particular, children with central nervous system tumors and leukemia have an increased risk.
Previous research in this area has primarily focused on information needs related to diagnosis, treatment and prognosis. This study, however, extended those findings to examine the parents' needs for information specifically about NCLE. The researchers surveyed a total of 90 parents whose children were undergoing or completed cancer treatment with a series of questionnaires to determine their perceived knowledge of NCLE and the need for further information. The study also took into account the parents' coping style, perceived risk for NCLE, stress, and information related to each child's diagnosis and treatment.
The study's overall goal was to first determine what preferences the parents had for obtaining information on NCLE and what causes parents to want more or less information.
Lead author Christine Trask, PhD, ABPP, of the neuropsychology program at Rhode Island Hospital says, "This study showed us that parents had a moderately positive satisfaction level with regard to the information they received about NCLE, but it is also clear that there is a strong desire across all groups to know more." Trask also notes, "One particularly interesting finding is that parents had significant variability about when they wanted to receive information about NCLE. Parents who reported higher levels of emotional distress, lower levels of education, or who had a child with leukemia reported wanting to receive more information on NCLE as early as possible."