Children born prematurely (<37 weeks gestation) have an increased risk for chronic health problems and developmental challenges compared to their term-born peers. The threats to health and development posed by prematurity, the unintended effects of life-sustaining neonatal intensive care, the associated neonatal morbidities, and the profound stressors to families affect well-being during infancy, childhood, adolescence, and beyond. Specialized clinical programs provide medical and developmental follow-up care for preterm infants after hospital discharge. High-risk infant follow-up, like most post-discharge health services, has many shortcomings, including unclear goals, inadequate support for infants, parents, and families, fragmented service provisions, poor coordination among providers, and an artificially foreshortened time horizon. There are well-documented inequities in care access and delivery. We propose applying a life course health development framework to clinical follow-up for children born prematurely that is contextually appropriate, developmentally responsive, and equitably deployed. The concepts of health development, unfolding, complexity, timing, plasticity, thriving, and harmony can be mapped to key components of follow-up care delivery to address pressing health challenges. This new approach envisions a more effective version of clinical follow-up to support the best possible functional outcomes and the opportunity for every premature infant to thrive within their family and community environments over their life course.

Aim

To determine the concurrent validity of the Warner Initial Developmental Evaluation of Adaptive and Functional Skills (WIDEA-FS), a criterion-specified questionnaire that assesses a child's adaptive skills in everyday contexts, and the Bayley Infant and Toddler Scales of Development, Third Edition (Bayley-III).

Method

In a prospective cohort study, 431 WIDEA-FS and Bayley-III assessments were completed among 341 children, aged 10 to 36 months corrected age (158 females, 183 males; median [interquartile range] gestational age at birth 32wks [29-38]), monitored in a high-risk neonatal intensive care unit follow-up clinic.

Results

WIDEA-FS scores were significantly associated with Bayley-III scores in all domains. Lower scores on the WIDEA-FS were significantly associated with an increased risk of adverse developmental performance on all Bayley-III scales. The association was strongest for motor and language Bayley-III scores when tested at <30 months of age, and for cognitive Bayley-III scores when tested at ≥30 months of age.

Interpretation

The WIDEA-FS has concurrent validity with the Bayley-III and may be a useful tool in high-risk follow-up settings.

What this paper adds

WIDEA-FS mobility, communication, and social cognition domains are concurrently valid in infants at high-risk for neurodevelopmental disability. Bayley-III motor, language, and cognitive composite scores are concurrently valid in the same group. The WIDEA-FS mobility and communication domains may be most clinically useful in children <30 months.

To determine if multiple doses of erythropoietin (Epo) administered with hypothermia improve neuroradiographic and short-term outcomes of newborns with hypoxic-ischemic encephalopathy. In a phase II double-blinded, placebo-controlled trial, we randomized newborns to receive Epo (1000 U/kg intravenously; n = 24) or placebo (n = 26) at 1, 2, 3, 5, and 7 days of age. All infants had moderate/severe encephalopathy; perinatal depression (10 minute Apgar <5, pH <7.00 or base deficit ≥15, or resuscitation at 10 minutes); and received hypothermia. Primary outcome was neurodevelopment at 12 months assessed by the Alberta Infant Motor Scale and Warner Initial Developmental Evaluation. Two independent observers rated MRI brain injury severity by using an established scoring system. The mean age at first study drug was 16.5 hours (SD, 5.9). Neonatal deaths did not significantly differ between Epo and placebo groups (8% vs 19%, P = .42). Brain MRI at mean 5.1 days (SD, 2.3) showed a lower global brain injury score in Epo-treated infants (median, 2 vs 11, P = .01). Moderate/severe brain injury (4% vs 44%, P = .002), subcortical (30% vs 68%, P = .02), and cerebellar injury (0% vs 20%, P = .05) were less frequent in the Epo than placebo group. At mean age 12.7 months (SD, 0.9), motor performance in Epo-treated (n = 21) versus placebo-treated (n = 20) infants were as follows: Alberta Infant Motor Scale (53.2 vs 42.8, P = .03); Warner Initial Developmental Evaluation (28.6 vs 23.8, P = .05). High doses of Epo given with hypothermia for hypoxic-ischemic encephalopathy may result in less MRI brain injury and improved 1-year motor function.