Functional outcomes in self-care, mobility, communication, and learning in extremely low-birth weight infants

Gaps have existed in specifying degrees of severity of cerebral palsy assessment of self-care and communicative competencies, and specifying age-appropriate preschool educational and behavioral competencies. Imbedded in the concept of measuring functional status is the interaction between health and neurologic impairments, developmental challenges and competencies, family resources and disadvantages, and the child's current status. In reviewing historic outcomes of severe ROP over the past 40 years, it was noted that severe ROP caused blindness in 2% to 11% of survivors. There was a constant observation that approximately 50% of severe ROP survivors with blindness had multiple functional and developmental challenges beyond blindness alone. Similarly, in reviewing outcomes of cerebral palsy, it is imperative to describe the severity of cerebral palsy and functional consequences in motor, selfcare, communication, and learning. The reason to measure the functional status of children with neurodevelopmental impairments before first grade is that the degrees of severity of these disorders can be specified before attending school with peers. Subtler aspects of neurodevelopmental impairments need to assess impact on literacy, information learning, written language, social competencies with peers, and recreational and community participation. In this way, we can understand the vulnerabilities and resiliences of children and families of VLBW and ELBW status. This is a critical step in understanding long-term quality of life and independent living issues. In addition, our efforts can address those factors and pathways whereby multiple disabilities and multiple functional limitations cluster. Our biomedical intervention can prioritize strategies that lessen severe multiple disabilities and simultaneously support families, when despite our best efforts functional challenges are life long.