Changing definitions of long-term follow-up: Should “long term” be even longer?

Abstract

There have been amazing changes in outcomes of preterm (PT) infants in the past 200 years.1 Whereas early studies reported only survival rates, Dr. Hess published the first outcome study of PT infants in Chicago in 1953.1 Dr. Lubchenco then published the 10 year follow-up of premature infants born in 1947 to 1953 and identified a 68% handicap rate.2 As a result of these early studies, the importance of evaluating NICU graduates both for surveillance and as an outcome of trials was recognized. During the 1970s there was a gradual expansion in the number of follow-up programs in the United States (US) with an increasing number of follow-up studies published. In the 1980s the importance of multicenter clinical research networks was recognized and the NICHD Neonatal Research Network (NRN) was initiated in 1986. Follow-up protocols, definitions, and outcomes have evolved over the last 30 years and will be reviewed with a focus on NICHD NRN studies.

Neurodevelopmental outcomes at 2 and 5 years of age in very-low-birth-weight preterm infants born between 2002 and 2009: A prospective cohort study in Taiwan

“…The prevalence of CP at 2Y was 6.31% in our study, which is within the range of other large-scale studies (5.9%e14%). 1 The rates of neurosensory impairments, namely deafness or hearing aids required and bilateral blindness, were 2.41% and 0.54%, respectively. These rates were similar to the report of the NICHD NRN.…”

“…Therefore, the developmental outcomes at 2Y should be explained carefully because it is less predictive for later learning status. 1,3,6,7,20,25,27…”

Nurturing the preterm infant brain: leveraging neuroplasticity to improve neurobehavioral outcomes

“…98 Between 9 and 20% of extremely preterm children have CP, with the largest proportion presenting with milder forms. 76,99 The severity of CP is difficult to accurately define prior to 2 years, in part due to the fact that this period is one of incredibly rapid brain growth and experience/use-dependent neuronal reorganization in response to the environment, including interventions and therapy. 100 Milder motor disorders are very common.…”

Understanding long-term neurodevelopmental outcomes of very and extremely preterm infants: A clinical review

“…2 Major neurodevelopmental morbidities in surviving preterm infants include cerebral palsy, deafness, blindness and cognitive delay, with scores of <2 standard deviations below the mean for age. 3 Recent reports also indicate a higher risk of autism spectrum disorder (ASD) and emotional behavioural abnormalities such as attention deficit hyperactivity disorder (ADHD). 3 While some of the outcomes can be identified in the first two to three years, neurobehavioural and emotional problems evolve later -at school age.…”

“…3 Recent reports also indicate a higher risk of autism spectrum disorder (ASD) and emotional behavioural abnormalities such as attention deficit hyperactivity disorder (ADHD). 3 While some of the outcomes can be identified in the first two to three years, neurobehavioural and emotional problems evolve later -at school age.…”