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Assessing Implementation and Effectiveness of Individual Education Plans for Children With Chronic Illness

6 Years
12 Years
Not Enrolling
Acute Lymphoblastic Leukemia, Central Nervous System Tumors, Lymphoma

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Trial Information

Assessing Implementation and Effectiveness of Individual Education Plans for Children With Chronic Illness

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).

Inclusion Criteria:

- Children, ages 6-12 years, who are within 2-5 years of diagnosis for either central
nervous system tumor or acute lymphocytic leukemia, or lymphoma at time of enrollment

Exclusion Criteria:

- Children who have been diagnosed with any type of cancer other than a central nervous
system tumor, lymphoma, or leukemia.

- Children who are not between the ages of 6-12 years and who were not diagnosed within
the past 2-5 years with central nervous system tumor, lymphoma, or leukemia.

- Children who are monolingual in a language other than English or Spanish

- Parent or caregiver of the child is not fluent in English or Spanish

- Child has been diagnosed with a significant mental health disorder that is not
responsive to behavioral or medical management. This includes severe depression,
schizophrenia, or bipolar disorder. Children whose mental health problem is
effectively treated are eligible for participation.

Type of Study:


Study Design:

Allocation: Randomized, Intervention Model: Parallel Assignment, Masking: Open Label, Primary Purpose: Supportive Care

Outcome Measure:

Academic achievement as measured by the Woodcock Johnson Tests of Achievement, Third Edition

Outcome Time Frame:

Measured at Year 1, Year 2 and 3

Safety Issue:


Principal Investigator

Daniel Armstrong, PhD

Investigator Role:

Principal Investigator

Investigator Affiliation:

University of Miami


United States: Institutional Review Board

Study ID:

RSGPB PBP 105184



Start Date:

January 2003

Completion Date:

October 2010

Related Keywords:

  • Acute Lymphoblastic Leukemia
  • Central Nervous System Tumors
  • Lymphoma
  • pediatric cancer, neurocognitive outcomes for pediatric cancer
  • acute lymphoblastic leukemia
  • central nervous system tumors
  • lymphoma
  • Leukemia
  • Leukemia, Lymphoid
  • Precursor Cell Lymphoblastic Leukemia-Lymphoma
  • Lymphoma
  • Nervous System Neoplasms
  • Central Nervous System Neoplasms



Mailman Center for Child Development University of Miami Miller School of MedicineMiami, Florida  33136