Source: Fall 2004 CCCF Newsletter
Over the past 20 years, we have learned a great deal about how children treated for cancer learn and perform in school. Perhaps the most important thing we have learned is that there are patterns of abilities that occur after successful treatment that are different from those seen with more common learning problems that are often call “learning disabilities.” This difference is important, since the understanding of learning, and the approach to evaluating learning in children treated for cancer, needs to be different as well. For this reason, some of the standard approaches to testing children with cancer that occur in the school and other private settings may not be adequate for identifying problems and planning ways to help.
Common Approaches to Evaluation of Learning Problems
In the public schools, and in many private settings, a child’s ability to obtain special education services for learning problems is based on his or her performance on a group of tests of intellectual ability and academic achievement. Commonly, children are administered a standardized IQ test, along with tests of school-based skills, and often a measure of adaptive function.
IQ tests are individually administered to the child and are made up of a number of subtests of specific abilities. A child’s score is based on his/her performance compared to other children of the same age. Three scores from an IQ test are considered:
- A verbal IQ score, which is an index of 5 to 6 different tests of verbal or language-based skills.
- A Performance IQ score, which is an index of 5 to 6 tests of visual, motor, speed, and perceptual abilities, and
- A Full Scale IQ score, which is a combination of all the tests included in the Verbal and Performance IQ scores.
Academic Achievement Tests
The academic achievement tests are also individually administered, and may involve tests of Reading (word recognition and comprehension), Arithmetic (math calculations and applied math abilities), Spelling, and Writing. The child’s scores on these tests are based on his or her performance compared to other children of the same age or in the same grade.
Tests of Adaptive Function
Tests of adaptive function are usually administered in the form of an interview with the parent or caregiver. These tests typically provide information about a child’s communication, daily living, socialization, and motor skills compared to other children the same age, as observed by the parent or primary caregiver.
Use of Tests for Classification
Determination of a learning problem is usually based on several criteria. Children may be classified because their scores fall within a certain range, or because there are discrepancies between test scores in identified areas. Some of these classifications include:
Impaired Cognitive Abilities (Mental Retardation): Children who score below 70 on an IQ test, have academic achievement scores in this same range, and have scores on a standardized measure of adaptive function (e.g., a parent report of the child’s communication, daily living, socialization, and motor skills) that are also below 70 may meet criteria for diagnosis of impaired cognitive abilities or mental retardation.
Specific Learning Disability. Children who score above 70 on an IQ test, but have a significant discrepancy (usually more than 15 points) between their IQ score and measures of academic achievement (Reading or Math) may qualify for services for the learning disabled. Usually some indication of a processing deficit (e.g., visual-motor or auditory processing) is also necessary for this classification.
Varying Exceptionalities. Children whose test scores indicate learning problems, but who also have other sensory deficits (e.g, hearing, vision), physical movement problems, or speech difficulties, may be classified in the category of varying exceptionalities, and may receive a range of both educational and therapeutic services.
Other Health Impaired. Children who experience problems in school that can be attributed to a chronic health condition (including cancer) may fall under the 504 regulations that permit services for children who do not otherwise meet special education categorization. However, many may also be eligible for Individual Education Plans (IEPs) and access to a full range of special education services.
The late effects of treatment of cancer in children often involve very specific disabilities, including visual perception, memory, processing speed, and sequencing. Problems in these areas are not commonly seen in children not treated for cancer. Over the past 20 years, investigators and parents have observed that the types of testing done for school problems do not include tests that identify the kinds of problems faced by children with cancer and are not helpful in determining the kinds of assistance that is needed. For these reasons, clinicians and parent advocacy groups are increasingly recommending that children treated for cancer receive a battery of tests that focus specifically on the patterns of difficulties that may be experienced. This kind of testing is commonly referred to as neuropsychological testing.
What is Neuropsychological Testing?
Neuropsychological testing involves giving a child a number of tests that provide information about how the brain works in the areas of memory, speed, language, visual processing, auditory processing, integration of information, emotional and behavioral regulation, and planning and organization. The tests are administered by a trained professional (either a licensed psychologist or someone supervised by the psychologist). The purpose is to provide a comprehensive, detailed assessment of a person’s ability to encode, process, store and express information. Interpretation of the various test results allows strengths and weakness to be uncovered. From this evaluation, recommendations can be made for accommodations to assist learning and functioning.
The tests that are used are developed for children, and the tests that are given are selected to match the skills expected for children of specific age ranges. The child’s scores are based on how he or she performs compared to other children of the same age. Neuropsychological tests of specific abilities may vary, depending on the age of the child at the time of diagnosis and treatment, the age at the time he or she is tested, and what kind of treatment he or she received.
What is a Neuropsychologist?
A neuropsychologist is a licensed psychologist (Ph.D. or Psy.D.) who has special and advanced training in evaluating the relationship between the brain and behavior in a number of areas. A pediatric neuropsychologist is a licensed psychologist who has training and experience in understanding the relationship between the brain and behavior in children. This requires the additional skill of understanding how this relationship changes over time as the child’s brain grows and develops.
Most states do not specifically license neuropsychologists, although the American Board of Professional Psychology does provide a board certification for advanced skills in the area. There is not a separate certification for pediatric neuropsychology. For these reasons, parents and referring physicians should determine whether the psychologist has obtained training in brain-behavior relationships, neuropsychological testing, neuro-rehabilitation, or other similar area, and whether he or she has experience evaluating children with complex medical problems that affect the brain. Knowledge about the disease process and the effects of chemotherapy and radiation may be critical to evaluations that are helpful. If parents are unsure of the qualifications of a psychologist to perform this type of evaluation, they should discuss this with their child’s oncologist to be sure that a knowledgeable person is available to perform the evaluation. Most pediatric oncology programs that participate in the Children’s Oncology Group have identified a qualified professional in this area.
The neuropsychologist can help parents and teachers:
- Understand how treatment has affected thinking, learning, and behavior.
- Identify what services and accommodations may be needed in the educational setting.
- Recommend interventions.
- Advise on potential or likely improvements, problems and changes.
Who Needs Neuropsychological Testing?
Neuropsychological testing is usually indicated for children with:
- Tumors of the central nervous system (CNS), especially those requiring cranial radiation, but including those who were treated with surgery only.
- Acute lymphoblastic leukemia, particularly those treated with cranial radiation and those on more recent protocols that involved triple intrathecal chemotherapy and higher dose methotrexate during consolidation.
- Diseases requiring radiation to the head, including those receiving total body irradiation prior to bone marrow or stem cell transplantation.
- Very young children who receive intensive chemotherapy and require prolonged hospitalizations because of treatment and side effects.
- Other children who are identified by the pediatric oncologists because of specific concerns about that child’s school performance, learning, or development.
Because the effects of cancer treatment appear to emerge over time, a single testing will usually not be adequate to address the child’s needs as he or she develops. Obtaining an evaluation during the first year after diagnosis will help address immediate difficulties that may occur because of medication side effects or school absences, and will also provide a “baseline” for determining whether there are “late effects” when the child is a survivor. Re-evaluations every 18 months to 3-years (shorter intervals during the elementary years, with longer intervals in adolescence and young adulthood) are usually recommended to assess changes due to treatment and revise recommendations for intervention.
Preparing the Child for Testing
When the word “test” is used with a child treated for cancer, it inevitably brings up thoughts of needles, painful procedures, or confining spaces. For this reason, special care should be taken when talking with a child about neuropsychological testing. Both parents and the psychologist should be sensitive to this issue. There are several strategies that may be helpful:
- Explain to the child that no needles or painful procedures are involved in this kind of testing. Neuropsychological testing is a “no stick zone.”
- Explain that these are not tests that you pass or fail. They are tests that help the psychologist, parents, and child understand how the child’s brain works and how he or she best learns. The tests will hopefully identify areas where learning is difficult, but will also identify areas where the child does well.
- Explain that some of the tests may be really easy, some may be very hard, and some may be in-between. No one is expected to be able to know or do everything perfectly, but each child should do his or her very best. However, if there is something that is too hard, after giving a good try, or there is something that the child has never heard before, then the best answer may be “I don’t know.”
- Give the child a chance to ask questions, both of his/her parents before the testing session, and of the psychologist before and at appropriate points during testing.
- Explain that the results of the test will be used to find ways to help make learning and doing well in school a bit easier and more successful.
Parents should also prepare the child and themselves for the fact that neuropsychological testing requires time, a positive relationship between the child and the person administering the tests, and sensitivity on the part of the psychologist about special issues for the child with cancer (e.g., increased fatigue). In some cases, the psychologist may recommend conducting the evaluation over several sessions to be sure that the child’s performance is the best possible, and not influenced by fatigue. This kind of evaluation is not something that can be rushed, so parents and children should approach the testing session with patience.
Parts of a Neuropsychological Evaluation
The neuropsychological evaluation involves more than just giving a few tests. It is designed to provide a comprehensive picture of the way the child learns and develops, and therefore includes a number of important parts. Most neuropsychological evaluations include:
- A detailed interview with the parents about the child’s medical, developmental, learning, behavioral, and social history, with specific attention to the type of disease, treatment involved, and results of any hearing, vision, and neuroimaging evaluations that have been done. A review of past and current medications should be included in this interview.
- A brief family interview about family history of learning, attention, emotional, or behavioral problems.
- Tests of IQ, academic achievement, and adaptive behavior.
- Specific tests of visual and verbal memory, sequential memory, attention and concentration, visual-spatial-motor integration, processing speed, language ability (expressive and receptive), social perception, and executive function (planning, organization).
- Other special tests may be included if there are sensory deficits (e.g., vision or hearing), motor impairments, or a history of learning problems prior to diagnosis of cancer.
- Screening for social, behavioral, or emotional difficulties.
Many of the tests used in neuropsychological testing are not included in the typical evaluation provided in the school system, although there may be some overlap on some tests.
Interpretation of Results: The Report
Often, parents and teachers view the neuropsychological evaluation as being primarily focused on what tests are given. However, the real benefit of a neuropsychological evaluation is the interpretation of the patterns of test scores, which leads to recommendations that may be helpful. The interpretation and recommendations rely on the knowledge and experience of the psychologist related to normal brain development, an understanding of the effects of disease and treatment on the developing brain, and an awareness of the multitude of complex educational, developmental, medication, and therapeutic interventions available. There are two common types of interpretations that usually come from a neuropsychological evaluation:
- Current functioning. This type of interpretation provides information about how the child is performing at the time of testing compared to other children his or her same age. The psychologist also examines the patterns of these scores to determine if there are any inconsistencies between abilities, or if there are obvious delays. This point is important. What has been learned about late effects in childhood cancer is that IQ does not tell the story. Some areas of brain function do not seem to be at as great a risk for problems as others. For this reason, the absolute scores on any given test are not the major concern. Instead, the neuropsychologist examines patterns of abilities (e.g., visual vs. verbal memory, language vs. non-verbal problem solving). The neuropsychological evaluation often detects patterns of clearly defined strengths, as well as weaknesses. The IQ score may seem okay to parents, but the pattern of difficulties may represent a significant set of problems that need to be addressed, and may help parents and teachers anticipate problems that may be encountered in the future. This interpretation of the pattern is a major focus of the evaluation.
- Functioning over time. This is a more complex interpretation, but one that can provide major benefit. This interpretation examines how scores on the various tests have changed over time. Functioning over time can only be done if there are previous neuropsych results for comparison. Based on knowledge about normal brain development, the type of treatment, and the age of the child at treatment, this type of interpretation may permit some limited predictions about future functioning. More importantly, it may also allow the development of interventions that can prevent or lessen new problems down the line.
Parents should expect that the report and personal feedback session with the psychologist will provide them with a clear summary of the test results, an interpretation of what these results mean, and specific recommendations about how to address any problems that testing may have identified. Sometimes recommendations involve:
- Additional testing by developmental specialists (e.g., speech and language, audiology).
- Specific suggestions for how a child can be taught to read, do math, or write.
- Suggestions for “accommodations” in the school setting (e.g., extra time to complete work, use of books on tape, use of calculators).
- Consideration of evaluation for medications that may be helpful (e.g., stimulant medications for attention problems).
- Referrals for counseling, therapy, or behavioral management to address behavior or emotional problems that were identified during the evaluation.
- Suggestions about special school programs for the child with complex difficulties.
If these recommendations are not provided, or if they are provided but don’t make sense, parents should always feel free to ask the psychologist to provide more information and explanation so that the information can be understood.
- Neuropsychological testing can be expensive and time consuming, but it offers information that is typically not obtained in a standard school evaluation.
- The results of the evaluation should be interpreted by a professional who has extensive training in interpreting complex test results.
- Parents of children whose cancer or treatment involved the brain should be aware of the potential risk to their child’s learning and discuss neuropsychological testing with their child’s oncologist. Repeated evaluations (conducted every 2 to 3 years or if there are new, specific concerns) may be needed through high school, and perhaps into college.
- The reason for the neuropsychological evaluation is to obtain information that can be used to have each child reach his or her maximum potential.
Dr. Armstrong is Professor & Associate Chair of the Department of Pediatrics and Director of the Mailman Center for Child Development at the University of Miami School of Medicine.