Assessing the Effectiveness of Individual Education Plans for Childhood Cancer Survivors

For years, researchers have examined the effects of cancer and its treatment on children's neurodevelopment. This body of research has identified a number of specific threats to children's cognitive functioning and academic achievement, due to both acute effects and late effects of cancer and its treatment. These often translate into difficulties in the academic setting. Specifically, areas of cognitive and behavioral development are frequently affected, leading to concomitant difficulties in academic achievement and social interaction. Previous research has indicated that such developmental effects and concomitant difficulties are particularly notable in children treated for brain tumors and for leukemias with central nervous system (CNS) involvement. Neurodevelopmental assessments conducted as part of clinical evaluations serve to identify individual strengths and weaknesses of each child treated. Results of these assessments are used to formulate recommendations targeted at compensating for weaknesses by accentuating strengths of each child. Child Study Team meetings are scheduled, at the parent's request, at the child's school in order to use these recommendations in developing Individual Educational Plans (IEPs) to best meet the special needs of the student. At present, no formal follow-up procedure exists to ensure that the IEPs are implemented appropriately, nor that they are effective in meeting the identified special needs of the children.

The present study proposes to 1) evaluate the IEP implementation process for children with cancer, 2) evaluate the effectiveness of IEPs in helping to improve academic outcomes for children with cancer, and 3) to evaluate the influence on academic outcomes of a high-monitoring follow-up intervention for children with cancer. To address these objectives, school-aged children with central nervous system tumors, acute lymphoblastic leukemia, or lymphoma will be administered a neurodevelopmental assessment to measure any specific educational needs they may have. The results of the neurodevelopmental assessment are provided to the parent in a feedback session where any questions or concerns regarding the evaluation can be addressed. At the time of the feedback session, parents are informed of the IEP process and are requested to contact the school to request that a Child Study Team Meeting take place. The study personnel offer to attend the meeting with the parent. Results of the assessments will be used to help guide recommendations made for academic placement and accommodations as per the school's guidelines.

Children with cancer will be assigned to either a quarterly follow-up or annual follow-up group. For those children in the quarterly follow-up group, parents and primary teacher (the primary teacher is identified by the parent/guardian as the teacher who has the most contact with the child and/or knows the child best) will be asked to provide information at the end of each grading period (4 times/year) regarding the child's performance, progress, and adherence to the IEP developed. For children in the yearly follow-up group, this information will only be collected at the end of each academic year. Children in the quarterly and annual follow-up groups will be re-assessed annually for a total of 3 years to evaluate any changes in neurodevelopmental functioning and academic achievement.

Children in the two experimental groups will be administered a neurodevelopmental evaluation, and, in addition, will receive academic follow-up on either a quarterly or annual basis, depending upon to which group they are randomized. Enrollment is on an ongoing basis and each participant will be followed for 3 years after enrollment, receiving a neurodevelopmental evaluation each year with a final endpoint evaluation at year 4 (a total of 4 neurodevelopmental evaluations).