Helping the Child with Learning Difficulties After Transplant Grace Mucci, Ph.D., M.S., ABPdN Coordinator, Neuropsychology Program CHOC Children s Hospital
Objectives Review incidence of cognitive deficits/delays in childhood survivors of HSCT Discuss impact of HSCT on developmental milestones Identify those at greatest risk for cognitive late effects Review process of the neuropsychological assessment Describe strategies for use at home and in school to assist children with cognitive difficulties Review Educational Law (Section 504, IEP)
Importance of School and Learning Considered the work of children Where they develop key life skills Social awareness Skill building Knowledge base Communication skills Peer negotiation Self-regulation Self-esteem
What are Cognitive Late Effects? Cancer survival rates have dramatically improved Five-year survival rate increased from 58% in 1975-1977 to 83% 2002-2008 However, some current cancer treatments continue to have a long-term impact on physical functioning and thinking skills Cognitive effects = changes in thinking, problem-solving, planning, attention, and/or memory, etc. that can affect learning. We must address school related issues School Reintegration and transition Education of teachers and other school personnel Parents knowledge of their child s learning strengths and weaknesses
Who is at Risk?? Children with brain tumors impact of the tumor itself impact of surgery and/or cranial radiation Children with leukemia treatments of intrathecal chemotherapy and possible cranial radiation
Who is at Risk? Children undergoing bone marrow transplant or stem cell transplant intrathecal chemotherapy and/or total body irradiation (TBI) Craniospinal radiation (particularly >1800 cgy) Type of transplant (allogeneic vs. autologous) Graft-versus-host disease (GVHD) Acute transplant-related problems (e.g. central nervous system infections)
Incidence and Severity of Effects Varies By: illness treatment type and intensity time since treatment, age at treatment specific factors of the child (e.g., age, gender, pre-existing abilities) History of Learning Disabilities or neurodevelopmental disorders in child or family members prior to illness Major family discord Non-English speaking Who is at Risk?? Lower SES, lower maternal education, malnutrition, little stimulation during early childhood Children at points of academic transition
Impact of HSCT on Developmental Milestones Length of hospitalization Missed opportunities for development of skills Age of diagnosis Lengthy hospitalization and treatment process Family cohesion Maternal age at time of transplant Maternal depression
Cognitive Deficits/Delays in Childhood Survivors of HSCT Caveat Few studies devoted to HSCT Most studies examinine treatment of pediatric cancer Common Neurocognitive difficulties found in survivors of ALL: Concentration, sustained attention, and memory Planning, organization, inhibition, executive functions Visual-motor integration, visuospatial processing Fine motor coordination, writing, and motor speed General processing speed Learning problems (especially in math), but also reading comprehension IQ changes sometimes over time
Longitudinal Study on Pediatric HSCT (Barrera, et al, 2008) No major change in intelligence; in fact, improvements in processing speed and nonverbal intelligence were found 2 years post-transplant However, high drop out rate of those who received CRT and TBI Significant decline in mathematics skills Spelling and Reading not affected
Longitudinal Study on Pediatric HSCT cont d Age of mother at time of diagnosis Mean IQ scores were higher pre-transplant in children with older mothers Impact of parental mental health Children whose mothers were depressed demonstrated lower performance IQ (PIQ) An interaction effect was found: Children who received CRT and TBI and high maternal depression obtained lowest PIQ Family cohesion showed better outcomes
Brain Tumors Treatment may include surgery, radiation, and/or chemotherapy Impact on learning and cognition may vary: by tumor location Surgery Total versus partial resection type/ intensity of treatment (i.e., cranial radiation) age at diagnosis and treatment Longer time since diagnosis and treatment Brain developmental trajectory
Intrathecal Chemotherapy Parents of children with Acute Lymphocytic/Lymphoblastic Leukemia (ALL) reported them to be having more trouble on everyday cognitive and academic tasks than children with no illnesses, though better than those with diagnosed learning disorders Inconsistent findings some show no problems 2/3 show specific difficulties (e.g., attention, nonverbal memory, perceptual-motor, and specific academic skills) some suggest problems in about 30-50% of children
Sometimes used to treat: Brain tumors, eye socket tumors ALL in the central nervous system As a conditioning regimen for a bone marrow transplant Dose varies >1800 cgy at most risk Cranial Radiation Chemotherapy + Radiation (especially Cisplatin ) associated with increased hearing loss which may lead to language processing difficulties
Quick Review of Brain Functioning White Matter Tissue through which messages pass between different areas of gray matter Fatty substance called myelin that surrounds the nerve fibers (axons) Acts as electrical insulation Allows for quick passage of signals Gray Matter Neuronal cell bodies where information is processed and understood Glial Cells and Capillaries
Neuroimaging Findings Methotrexate and CRT May result in small hemorrhages in the white matter
Gray versus White Matter: Does it Matter? Isn t is all in the Brain? One recent study by Anderson et al found: Minimal neurocognitive deficits for most transplant survivors Greater effects on tasks that measure white matter functions compared to gray matter White matter damage is responsible for most neurocognitive late effects Measuring white matter changes and deficits most likely to be demonstrated on neuropsychological evaluations that measure processing speed, visuomotor skills, attention and concentration, memory
Summary of Findings Normal cognitive development and learning during early childhood key factor in predicting cognitive and educational outcome of HSCT Caregiving environment is crucial for better cognitive and educational outcome Pre-HSCT cognitive and social functioning is predictive of later functioning Young age at diagnosis risk factor for later cognitive declines White matter damage more responsible for cognitive late effects Processing speed, visuomotor skills, attention and concentration, memory most often affected Academic functioning most affected is Mathematics
Purpose of the Neuropsychological Assessment Distinguishes behaviors that are within a normal developmental framework from those considered to be alterations given the child s social-environmental context Helps to explain and identify various learning deficits Helps to localize dysfunction Evaluates the neurodevelopmental course of specific subtypes of learning disabilities
Purpose of Neuropsychological Assessment Aids in differential diagnoses of psychiatric vs. neurological disorders Monitor recovery of functions following brain injury and neurosurgery and measure possible neurocognitive deterioration associated with neurodegenerative conditions Evaluate the complex interplay among cognitive, behavioral, attentional, memory and personality domains Help establish appropriate treatment, educational, vocational goals and recommendations following brain injury/insult
Neuropsychological Exam - Process Entire evaluation takes several hours 1 hour of intake and history gathering 5-8 hours of testing 2-3 hours for interpretation and report writing 1-2 hours of feedback
Areas Typically Evaluated Intellectual Ability Academic Skills Motor and Sensory Systems Speed of Processing and Mental Control Attentional Skills Executive Processing/Organizational skills Visual Perception Skills, Visual-Motor Integration Language processing Memory/Learning Emotional/Personality Functioning Adaptive Behavior
Preparing Your Child for Learning
General Effects of Cancer on School Attendance Doctor/clinic visits Inpatient stays Sick days Social interaction Changes in physical appearance Appetite and mood changes Limitations on physical activity Learning Neuropsychological side effects of treatment Vision or hearing impairment Fatigue/Nausea Performance
Transition Points in School Re-Entry Time of Diagnosis School re-entry following treatment absence Completion of treatment Long-term survival
Three C s Collaboration, communication and cooperation among all involved in the child s care and education Family School Medical team Books on tape Voice recognition software Use of calculator Strategies for Appropriate Academic Performance Oral testing or multiple choice when available PDAs and other organizational strategies
Time of Diagnosis - Strategies May need to establish a meeting with key school personnel to set up home-hospital instruction Need to create an academic plan
Strategies for Successful Determine when your child is ready to return Medical safety Psychosocial readiness School Re-Entry Pain level, degree of fatigue/strength Consider meeting to establish plan of return Address family s concerns, fears, expectations Plan for smooth transition back into classroom Classroom presentation may be particularly beneficial, especially for elementary grades May benefit from academic or neuropsychological evaluation Strengths, weaknesses, possible need for intervention
Strategies for Successful School Re-Entry Ongoing monitoring and/or assessment of academic progress essential Regular assessments can help identify emerging learning difficulties that can be targeted by the educational team NEED TO BE PROACTIVE
Special Education and the Law Federal and State laws apply Section 504 of the Rehabilitation Act of 1973 ( Section 504 ) Individuals with Disabilities Education Ace ( IDEA )
Section 504 of the Rehabilitation Act Background Applies to all entities receiving federal funds, including private institutions Ensures all students have appropriate access Adapts programs to ensure equal opportunity Process Meeting is held to determine eligibility and renewed/revised each year Input from team members may be helpful Accommodations Reducing amount of homework that must be performed Reducing class demand Note takers Elimination of timed tests and tasks
Individuals with Disabilities Education Act ( IDEA ) Designed to ensure that each child receives a free and appropriate public education (FAPE) Eligibility: Disability must impact the child educationally Categories: Intellectual disabilities Hearing impairments Speech or language impairments Visual impairments Emotional disturbance Orthopedic impairments Autism Traumatic brain injury Other health impairments Specific learning disabilities
IEPs Typically Include... Psychology Assessment School Health Services Occupational therapy Physical therapy Speech-Language therapy Audiology consultation Assistive Technology Counseling Recreational Programs Transportation Modifications in classroom or work Preferential seating Extended testing time Modified assignments Lecture notes Books on Tape Social Work Services
Importance of Continued Follow up and Monitoring Advocating for the child Communicating with the school Is the IEP/504 Plan being followed? Is the IEP/504 Plan effective? Back-up plan (i.e., What to do if it isn t working?) Building in a plan for transitions
Questions??
Resources National Dissemination Center for Children with Disabilities http://nichcy.org/ Learning Disabilities/Attention Deficit Disorder www.ldonline.org www.ldanatl.org www.adhdandyou.com Disability Resources https://www.disability.gov/ http://www.dor.ca.gov/disabilityaccessinfo/ Educational Grants/Funding http://www.beyondthecure.org/assist www.cancersurvivorsfund.org/
Resources (Cont.) Social Security Administration http://www.ssa.gov/pgm/ssi.htm Emotional Support http://www.survivorshipguidelines.org/pdf/emotionalissues.pdf Career Development and Job Issues www.cancerandcareers.org http://www.cancercare.org/financial http://www.cancercare.org/connect_workshops/237legal_protection s_workplace_062911_2011-06-29 http://www.canceradvocacy.org/assets/documents/working-it-outpublication-2012.pdf
Contact Information Grace A. Mucci, Ph.D., M.S., APBdN Pediatric Neuropsychologist Diplomate, American Board of Pediatric Neuropsychology Coordinator, CHOC Neuropsychology CHOC Children s Hospital 455 South Main Street Orange, CA 92868 (714) 509-8300, ext. 15490 gmucci@choc.org www.choc.org
Thank you.