Measuring functional outcomes after prematurity: Developmental impact of very low birth weight and extremely low birth weight status on childhood disability

Abstract

Our purpose was to describe functional outcomes in essential activities in preschool, school-age, and adolescent children who were born very (<32 weeks gestation) and extremely (<28 weeks gestation) prematurely. Very low birth weight (VLBW; 1000-1499 g), or extremely low birth weight (ELBW;<1000 g) populations are the focus of our analysis. We describe models of disablement and enablement for specifying the complexity of childhood outcomes using a framework of pathophysiology, impairment, functional limitation and functional strengths, disability in social roles and social participation, societal limitations and environmental facilitators. Representative early childhood, preschool, school-age, and adolescent studies were examined in terms of describing children's functional strengths and challenges after VLBW and ELBW survival. In early childhood, disability was assessed by diagnosing neurosensory impairments and delays on developmental testing. Instruments for measuring functional status in essential activities of self-care, mobility, communication and learning are described. Rates of neurosensory disability in the first three years among recent ELBW survivors ranged from 9-26% for cerebral palsy, 1-15% for blindness, 0-9% for deafness, and 6-42% for evolving cognitive disability (MDI <70). Rates of preschool functional limitation were 5-27% motor, 5-30% self-care, and 5-22% communicative. Rates of school-age functional educational disabilities exceeded 50%. Rates of adolescent activity limitation were 13-32% and vocational limitations were 27-71%. By examining the functional strengths and challenges of children with major neurodevelopmental impairments after very or extremely preterm birth, we can examine causal pathways that lessen the risk of severe functional disability. Among children with mild to moderate disability, we can enhance functional outcomes, optimize community participation, and provide quality family supports. In order to assess the changing outcomes of this vulnerable population of survivors, combinations of clinical and survey based methodologies are required.

Neonatal treatment philosophy in Dutch and German NICUs: health-related quality of life in adulthood of VP/VLBW infants

“…Still, more VP/VLBW infants develop major cognitive impairments and physical disabilities such as cerebral palsy (CP), blindness, and deafness than full-term comparisons [2][3].…”

Balance in children born prematurely currently aged 6–7

“…The development of medicine has made it possible to rescue children with low birth weight and severe complications resulting from prematurity. In premature infants, numerous health complications are diagnosed: retinopathy, hearing impairment, early brain injury with accompanying hypoxic events and ischemia [4,23,27,30,31]. They can adversely affect their development, including the balance system.…”

Rate of Spending on Chronic Conditions Among Medicaid and CHIP Recipients

“…[1][2][3][4][5][6][7][8][9][10][11][12] An increasing proportion of pediatric hospital admissions are for children with complex chronic conditions. [13][14][15] However, the apparent rise in childhood chronic condition prevalence and the associated fiscal consequences have not, to our knowledge, been documented in a state Medicaid program.…”