[The Gap between Need and Reality in Neuropsychological Care in Pediatric Oncology - Position Paper].
This position paper describes persistent neuropsychological late effects in pediatric oncology, identifies a substantial care gap, and calls for longitudinal monitoring, rehabilitation, standardized transition processes, reimbursement, and nationwide access to specialized services.
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This position paper describes persistent neuropsychological late effects in pediatric oncology, identifies a substantial care gap, and calls for longitudinal monitoring, rehabilitation, standardized transition processes, reimbursement, and nationwide access to specialized services.
Research significance
The record supports the need for structured neuropsychological care but does not test its efficacy; it is reasonable to hypothesize that early, hypothesis-driven assessment followed by tailored interventions and long-term monitoring could improve functioning, autonomy, quality of life, and participation.
Source abstract
Improved survival in pediatric oncology has resulted in a growing number of children, adolescents, and young adults affected by neuropsychological late effects of disease and/or treatment. Patientswith brain tumors and malignancies involving the central nervous system are particularly at risk. Neuropsychological impairments affect cognitive, emotional, and behavioral functioning and have sustained consequences for education, daily life, and social participation. In accordance with the concept of "growing into deficit," clinically relevant impairments may only emerge years after completion of therapy. Neuropsychological care is considered an integral component of comprehensive medical and psychosocial care. It comprises hypothesis-driven assessment beyond global IQ measures, counseling, everyday-oriented interventions and therapy, and continuous evaluation of treatment goals. Prerequisites include specialized developmental and clinical neuropsychological expertise, methodological quality assurance, multiprofessional collaboration, and adequate resources. In addition to neuropsychological care during oncological treatment, long-term neuropsychological monitoring from diagnosis through adult long-term follow-up is required. Outpatient and inpatient rehabilitation are essential to promote autonomy, quality of life, and participation. The Neuropsychology Working Group of PSAPOH identifies a significant gap in care and calls for the establishment and sustainable implementation of routine neuropsychological services, standardized transition processes, reimbursement of services, and nationwide access.