Developing pre-school surveillance tools for adaptive functioning: Lessons for neuro-oncology

Advances in neuro-oncology have resulted in dramatic increases in the survival of children with pediatric brain tumors, including those with medulloblastoma, the most common early childhood central nervous system (CNS) malignancy. Because of this increased survival, there is heightened awareness and recognition that an understanding of the impact of treatments and interventions on children’s development, learning, and adaptive behaviors is essential for optimization of long-term outcomes. One of the major reasons for studying these outcomes is that the developing nervous system has its unique vulnerabilities with respect to the primary tumor, its complications (hydrocephalus, increased intracranial pressure, hazards of tumor resection), and the late effects of treatments on children’s developmental, learning, and adaptive status. In addition, very young children are especially vulnerable to the toxic effects of radiation and other therapies, highlighting the importance of measuring emerging communication, coordination, and social adaptive skills. Lastly, there is increased concern about the long-term consequences of chemotherapy on specific neural populations and neural connectivity that affect memory, learning, and executive function.The purpose of this article is to review ways of conceptualizing CNS adaptive functioning in children diagnosed with brain tumors in early childhood. The international classification of functioning (ICF) model will be used to describe the spectrum of health and developmental outcomes of child neurodisability. An integrated strategy of surveillance for motor, communicative, and adaptive skills that can be linked to neuropsychological assessments will also be highlighted. This health, development, and functional surveillance framework will help us better evaluate how our management impacts on child and family well-being and how our interventions lessen severe multiple motor, communicative, and neurobehavioral morbidities.