Michelle R. Tremont

The vulnerable preschool child: The impact of biomedical and social risks on neurodevelopmental function

The scope of preschool children with biological risk and social disadvantage is large and includes over 1 million (28%) newborns per year. Currently in 1996, 7% of children are born with low birth weight, 1% are born with very low birth weight, 20% have alcohol exposure, and 10% have other drug exposure. Poverty is dynamic and impacts on 25% of children less than 6 years old with increased frequency in children who are minority, have mothers with less than a high school education, or are unmarried. There has been a markedly increased survival in very low birth weight and extremely low birth weight infants in the past 10 years. Outcomes of these neonatal populations reveals that parenchymal brain injury is the major predictor of cerebral palsy which occurs in 7% to 10% of very low birth weight survivors. However, poverty is the major predictor of low IQ. Fetal alcohol syndrome occurs in 1.9 per 1,000 births and is most often associated with mild mental retardation and educational underachievement. Studies investigating cocaine revealed that it is a multifactorial problem overlapping with polysubstance abuse and other risk factors for social disadvantage. The overwhelming number of children do not have cerebral palsy or severe mental retardation. The long-term impact is more subtle and needs more systematic analysis as well as critical evaluation of cognitive impairments and educational under-achievement. Hypoxic ischemic encephalopathy (HIE) cannot be determined by one biological measure. Though multiple disability occurs in 70% of children with Sarnat stage 3 HIE, 30% of survivors are not disabled. Children with mild to moderate HIE have long-term outcomes that are influenced by 9- to 12-month neurodevelopmental status and social disadvantage. By combining strategies to lessen biological risks and enhance developmentally appropriate environments, long-term outcomes of preschool children can be optimized.

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 childs 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.

Measuring Functional Status in Children With Genetic Impairments

One of the consequences of genetic impairments in early childhood is their long-term effect on childrens developmental skills in communication, learning, and adaptive behaviors. Functional assessment provides families and clinicians with a common language for describing a childs strengths and limitations in self-care (feeding, dressing, grooming, bathing, continence), mobility, and communication/social cognition. The National Center for Medical Rehabilitation Research described a model of disablement that includes five dimensions: pathophysiology, impairment, functional limitations, disability, and societal limitations. Using this framework, along with the Functional Independence Measure for children, the WeeFIM(R), we describe functional strengths and challenges in children with Down syndrome, spina bifida, congenital limb anomalies, congenital heart disease, urea cycle disorders, severe multiple developmental disabilities, and DiGeorge malformation sequence. We also briefly describe several pediatric functional/adaptive assessment instruments used by developmental professionals (Battelle Developmental Inventory, Vineland Adaptive Behavior Scales, Amount of Assistance Questionnaire). By tracking functional status, health professionals can prioritize secondary and tertiary prevention strategies that optimize self-care, mobility, communication, and learning. When functional limitations interfere with the acquisition of these essential skills, family and community support programs can be maximized.

Measuring functional status and family support in older school-aged children with cerebral palsy: comparison of three instruments.

OBJECTIVE To compare a pediatric and an adult version of a functional status measure and a family support measure for assessing school-age children with spastic cerebral palsy. DESIGN A prospective study involved functional status measurements using the Pediatric Functional Independence Measure (WeeFIM), the Adult Functional Independence Measure (FIM), and a family support measure, the Amount of Assistance Questionnaire (AAQ). PARTICIPANTS The feasibility sample consisted of 47 children aged 2 to 12 yrs with cerebral palsy. The study sample consisted of 20 children aged 7 to 16 yrs with spastic cerebral palsy (50% diplegia, 50% quadriplegia). INTERVENTIONS Initial assessment interview included the WeeFIM, developmental milestones, educational achievement information, and the AAQ. Within 1 month, a follow-up phone interview using the FIM was completed. MAIN OUTCOME MEASURE The WeeFIM and FIM measure independence in self-care, sphincter control, mobility, locomotion, communication, and social cognition. The AAQ measures the time and assistance required by a child in essential daily tasks. RESULTS Pearsons correlation coefficient exceeded .97 for WeeFIM and FIM total score in the total sample as well as in two subgroups of children: those with diplegia and quadriplegia. Total scores in WeeFIM and FIM as well as domain scores were significantly different between children with diplegia and quadriplegia. Parental amount of assistance on the AAQ was significantly correlated with WeeFIM and FIM scores. CONCLUSION Either the WeeFIM or FIM can be used for monitoring functional status through adolescence in children with spastic cerebral palsy. Functional limitations are highly related to requirements for parental assistance.

Medical Impairments, Functional Limitations, and Disability Status in School Age Children in the 1994 National Health Interview Survey

Medical Impairments, Functional Limitations, and Disability Status in School Age Children in the 1994 National Health Interview Survey

Functional Skills in Self-Care, Mobility, and Communication in 211 School Aged Children with Down Syndrome in Western Australia

Functional Skills in Self-Care, Mobility, and Communication in 211 School Aged Children with Down Syndrome in Western Australia