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."
The researchers note that as mortality from childhood cancer decreases and survival increases, oncologists are now faced with a struggle of how and when to present information on NCLE to parents. The time of diagnosis is often a time of high levels of stress and emotional distress for parents, and this may present some difficulties in their processing of information. Oncologists, therefore, must make a determination about when to present the information on the potential risks of NCLE to these parents.
Trask reports, "The findings from this study suggest that parents continue to have high needs for information about NCLE both during and after treatment. As a result, we recommend that health care professionals monitor parents' understanding and needs for information, even after completion of treatment when visits become less frequent."
The study also suggests that there is an association between parental distress and the timing of information. Trask comments, "If early provision of information helps prevent parental distress, this would provide a rationale for more thorough discussion of NCLE at the time of diagnosis."
One of the more surprising outcomes of the study was the lack of association between measures of parental coping and informational needs when compared to research in adult patients. Measures of tolerance of uncertainty and coping styles were not predictive of parents' informational needs. Trask says, "One hypothesis might be that there is a different response when caring for and making decisions for your child than when making health-care decisions for yourself."
The researchers note that longitudinal studies in this area would be helpful. Other researchers involved in the study include Peter Manley, MD, Cindy Schwartz, MD, and Jennifer Greene Welch, MD, of the Hasbro Children's Hospital pediatric hematology and oncology department, and Elissa Jelalian, PhD, of the Bradley Hasbro Children's Research Center and the department of psychiatry at Rhode Island Hospital in Providence, RI. The study was funded by a grant from the Lifespan Development Grant Award Program.
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