The NEMO Project

Children with cancer may experience neuropsychological impairments and there is increasing evidence that many cancer groups are at-risk. Most studies have focused on long-term survivors, but some impairments are shown shortly after diagnosis which could be due to the disease itself, neurotoxicity of treatments (e.g., cranial radiation, intensive chemotherapies), stress, and/or fatigue. These results suggest that early monitoring is necessary across pediatric oncology groups, including brain tumors, solid tumors, and hematological malignancies. However, comprehensive evaluations are not feasible or necessary to conduct with all patients, and thus, brief measures that are sensitive to impairments are essential to follow patients and to implement services in a timely manner. Previous studies have only completed screening assessments at one time point and compared patient performance to group normative data, which may miss information due to variability across time or between patients. Rather, subtle changes within individual patients may occur over time, and these changes may be associated with functional outcomes such as intelligence or levels of independence. Along with consideration of bio-psycho-social risk factors, we hypothesize that changes in cognition or behavior over time can identify those who are most at-risk of functional impairments. This research will assist in developing neuropsychology monitoring programs, which will ultimately lead to earlier detection of and intervention for neuropsychological deficits in pediatric oncology. We also hypothesize that results may differ between treatment units, suggesting that each unit requires a tailor-made program.

The primary objective is to examine whether changes over time in monitoring measures of cognition and behavior are associated with functional outcomes in pediatric oncology groups. Additional objectives are to examine trajectories, risk factors, and frequencies of neuropsychological impairment in early phases of treatment and survivorship as well as to determine the feasibility and acceptability of a neuropsychology monitoring program.

Single-center, prospective observational cohort study

This is a non-invasive, observational study and there is no substantial burden; if any, burden is related to time. Patients and parents/caregivers will be asked to complete neuropsychological tests and questionnaires at 5 time points across 2 years. The brief monitoring assessments are completed every 6 months (30 min for patients; 15 min for parents). More comprehensive testing will be completed at yearly intervals. Brain tumor patients and those referred for neuropsychological assessments will complete these tests as part of standard care; in these cases, it will take an additional 20-25 minutes for patients to participate in this study. If a patient is not seen for care, it will take 115-120 minutes for patients and 30-35 minutes for parents for these assessments. The most important tasks for our research questions are completed within the first 30-45 min of the assessment, and thus data is still obtained if testing needs to be shortened that day (i.e., due to fatigue, limited time). Furthermore, appointments will be combined with regularly scheduled appointments and there are opportunities for breaks or rescheduling the appointment if needed. Most questionnaires can be completed at home through the online KLIK portal. There are no anticipated risks for participation. One potential benefit is that parents will receive a summary of results from the comprehensive assessments (and will be referred for services when needed). Otherwise, there are no direct benefits for participation and results will be used to optimize care for future patients.