Assessing the Effectiveness of Individual Education Plans for Childhood Cancer Survivors
Condition: Acute Lymphoblastic Leukemia; Central Nervous System Tumors; Lymphoma
MeSH terms: Precursor Cell Lymphoblastic Leukemia-Lymphoma; Leukemia, Lymphoid; Nervous System Neoplasms; Central Nervous System Neoplasms
Study type: Interventional

Summary: 
      Neurodevelopmental outcomes in children treated for cancer involving the central nervous
      system (CNS) provide educators with new challenges with regards to classification,
      monitoring, and intervention in the regular or special education classroom setting.
      Recommendations resulting from serial neurodevelopmental evaluations for these children often
      do not overlap with traditional special education recommendations commonly included in
      Individual Education Plans (IEPs) for children with congenital or genetic learning problems.
      The investigators currently do not know whether or not school-based treatment for learning
      problems, based on the child's IEP, incorporates recommendations made based on a
      neurodevelopmental evaluation appropriately. In addition, it is not clear whether or not the
      recommendations that are included in a child's IEP have any beneficial outcome on the child's
      learning and academic achievement over time. The purpose of this project is to examine the
      relationship between neurodevelopmental outcomes, recommendations for intervention, special
      education services and accommodations included in a child's school IEP, and outcome for the
      child following implementation of the IEP. The study has two major specific aims:

        1. To quantify the clinical and educational contributions of recommendations resulting from
           neurodevelopmental evaluations and the subsequent development of IEPs.

           Hypothesis 1.1: Higher concordance between recommendations made based on
           neurodevelopmental evaluations and criteria written into children's IEPs will be
           associated with more positive academic outcomes (i.e. maintenance or improvement in
           academic skills).

           Hypothesis 1.2: Children who have higher concordance between criteria written into their
           IEPs and academic services actually received will show more positive academic outcomes
           than children whose IEP criteria and academic services are less concordant.

        2. To evaluate an intervention that will improve academic outcomes for children treated for
           cancer.

      Hypothesis 2.1: Children whose IEPs are monitored more frequently will show more positive
      academic outcomes than their peers whose IEPs are monitored less frequently.
    

Detailed description: 
      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).
    

Intervention name(s): Annual Intervention Group; Quarterly Monitoring of IEP
Intervention type(s): Behavioral; Behavioral
Intervention description(s): Parents/caregivers and the teacher of participants will be asked to evaluate the effectiveness of the child's IEP once per academic calendar year. The evaluation is done through the use of an IEP Questionnaire developed for this study. This questionnaire addresses the child's academic performance, progress, and adherence to the IEP developed.; Parents/caregivers and the teacher of participants will be asked to evaluate the effectiveness of the child's IEP four times per academic calendar year. The evaluation is done through the use of an IEP Questionnaire developed for this study. This questionnaire addresses the child's academic performance, progress, and adherence to the IEP developed.
Allocation: Randomized
Intervention model: Parallel Assignment
Masking: None (Open Label)
Primary purpose: Supportive Care
Keywords: pediatric cancer, neurocognitive outcomes for pediatric cancer; acute lymphoblastic leukemia; central nervous system tumors; lymphoma