- •
Categorization of neurodevelopmental impairments allows quantification of severe problematic outcomes in early childhood but these may not reflect later more subtle, functional outcomes.
- •
More prevalent, less severe, neurobehavioral dysfunctions are often not identified in early childhood but are important predictors of later academic achievement and social outcomes.
- •
Extremely preterm and other high-risk neonatal intensive care unit graduates are at risk for lifelong health needs that are often
What Are We Measuring as Outcome? Looking Beyond Neurodevelopmental Impairment
Section snippets
Key points
Early developmental testing for neurodevelopmental impairment
Two-year follow-up data, including assessments in cognitive, motor, and neurosensory domains, have traditionally been considered “long-term outcomes” for neonatal studies, although that view is changing.3 Findings in each of these areas have been used to define NDI as “mild,” “moderate,” or “severe,” based on preset thresholds. Although a composite score may produce greater power than individual components,1 there are concerns about overinterpretation of findings using this model. A “severe”
Comprehensive assessment of the high-risk neonate: beyond neurodevelopmental impairment
A recent review suggested 4 domains of child variables that would be important in a model of high-risk follow-up: learning and cognition, mental health, physical health, and QoL.27 We briefly summarize issues that may be considered within each domain as part of a comprehensive plan for assessment and monitoring of long-term outcomes for those born extremely preterm and other high-risk NICU graduates (Box 1).
Learning and cognition
Besides major disabilities that are usually considered in NDI, there is much interest in so-called “high-prevalence/low-severity dysfunctions” in NICU survivors.28, 29 These include low average to borderline IQ, learning disabilities, neuropsychological problems (eg, executive dysfunction, visual motor integration problems), attention-deficit/hyperactivity disorder (ADHD), and behavioral issues. These problems become more evident as the child grows older; they may not be apparent until school
Mental health
Emotional and behavioral sequelae are usually assessed through self-report, and parent and teacher questionnaires; the Child Behavior Checklist is used most frequently.49 Questions related to daily activities and behavioral interactions are grouped and scored to reflect problematic areas. Most studies have found that children born preterm have a higher prevalence of scores in the “clinically significant” range (T-scores 65 or greater), with both increased internalizing (withdrawn, depressed)
Motor Function
Although CP is a serious, but infrequent (<10%) consequence of extreme preterm birth, subtle motor and coordination difficulties are common, although often not recognized until school age. These findings may lead to a diagnosis of developmental coordination disorder (DCD).68 DCD results in lower performance than would be expected for age and intellect for daily activities that require motor coordination. Children with DCD may have delayed motor milestones and demonstrate problems with routine
Growth and nutrition
EPT infants have reduced growth capacity throughout infancy and childhood. In a Swedish cohort of children born at 23 to 25 weeks’ gestation, Farooqi and colleagues108 demonstrated delays in weight, height, and head circumference through age 11 years in EPT infants without motor disorders. Weight and height catch-up growth were seen by age 11 years in EPT infants, but beyond 6 months corrected age there was no catch-up for head growth. In fact, a significant proportion (22%) of EPT infants had
Quality of life
From the previous discussion it becomes apparent that children born EPT/VPT or ELBW/VLBW have different health and developmental trajectories that continue into adulthood than those born at term with normal weight. Functional status, defined as the ability to perform age-appropriate activities, may be assessed using tools such as WeeFIM,116 Vineland Adaptive Behavior Scale (Vineland-3),117 or the Pediatric Evaluation of Disability Inventory.118 Children with similar impairments may display
Summary
The traditional approach to NICU follow-up has involved detection of NDI in the first years of life by serial examinations and standardized developmental testing, with categorization of levels of impairment, primarily used for research purposes. Such early childhood assessments do not consistently correlate with long-term outcome metrics, and may either underestimate or overestimate later functional concerns. Less severe, but more prevalent, neurobehavioral dysfunctions, which only may become
References (122)
- et al.
Early neurodevelopmental outcomes of extremely preterm infants
Semin Perinatol
(2016) - et al.
Changing definitions of long-term follow-up: should “long term” be even longer?
Semin Perinatol
(2016) Defining outcomes for high-risk infants: problems and possibilities
Semin Perinatol
(2016)- et al.
Neurodevelopmental outcome in children with congenital heart disease
Semin Fetal Neonatal Med
(2013) Neurodevelopmental outcomes of extremely preterm infants
Clin Perinatol
(2014)Cognitive and behavioral outcomes following very preterm birth
Semin Fetal Neonatal Med
(2007)- et al.
Executive function in children born preterm: risk factors and implications for outcome
Semin Perinatol
(2016) - et al.
Behavioral problems in children who weigh 1000 g or less at birth in four countries
Lancet
(2001) Autism risk in very preterm infants—new answers, more questions
J Pediatr
(2014)- et al.
Prevalence and neonatal factors associated with autism spectrum disorders in preterm infants
J Pediatr
(2014)
Declining cognitive development from 8 to 18 months in preterm children predicts persisting higher parenting stress
Early Hum Dev
Long-term respiratory consequences of premature birth at less than 32 weeks of gestation
Early Hum Dev
Lung growth and development
Early Hum Dev
The natural history of bronchopulmonary dysplasia: the case for primary prevention
Clin Perinatol
Long term cardiovascular consequences of chronic lung disease of prematurity
Paediatr Respir Rev
Pulmonary function and exercise capacity for ELBW survivors in preadolescence: effect of neonatal chronic lung disease
J Pediatr
Weight in infancy and death from ischaemic heart disease
Lancet
Preterm birth—an emerging risk factor for adult hypertension
Semin Perinatol
Neurologic and developmental disability at six years of age after extremely preterm birth
N Engl J Med
Prognostic neurodevelopmental testing of preterm infants: do we need to change the paradigm?
J Perinatol
The outcomes of very preterm infants: is it time to ask different questions?
Pediatrics
The Children's Hospitals Neonatal Database: an overview of patient complexity, outcomes and variation in care
J Perinatol
School-age outcomes of very low birth weight infants in the indomethacin intraventricular hemorrhage prevention trial
Pediatrics
Motor and cognitive outcome after specific early lesions of the brain—a systematic review
Dev Med Child Neurol
Bayley scales of infant and toddler development
The conundrum of prediction
Pediatrics
Continuing issues with the Bayley-III: where to go from here
J Dev Behav Pediatr
Overestimating neurodevelopment using the Bayley-III after early complex cardiac surgery
Pediatrics
Poor predictive validity of the Bayley Scales of Infant Development for cognitive function of extremely low birth weight children at school age
Pediatrics
Changing neurodevelopment at 8 years in children born extremely preterm since the 1990s
Pediatrics
Cognitive and motor function of neurologically impaired extremely low birth weight children
Paediatr Child Health
Change in cognitive function over time in very low-birth-weight infants
JAMA
Stability and change in children's intelligence quotient scores: a comparison of two socioeconomically disparate communities
Am J Epidemiol
Preschool outcome of less than 801-gram preterm infants compared with full-term siblings
Pediatrics
Social variables predict gains in cognitive scores across the preschool years in children with birth weights 500 to 1250 grams
J Pediatr
Association of child poverty, brain development, and academic achievement
JAMA Pediatr
Socioeconomic status and the brain: mechanistic insights from human and animal research
Nat Rev Neurosci
Performance on the A-not-B task of Argentinian infants from unsatisfied and satisfied basic needs homes
Int J Psychol
Socioeconomic status and executive function: developmental trajectories and mediation
Dev Sci
Long term follow up of high risk children: who, why and how?
BMC Pediatr
Cognitive and neuropsychological outcomes: more than IQ scores
Ment Retard Dev Disabil Res Rev
Neurodevelopmental outcomes of infants born prematurely
J Dev Behav Pediatr
Follow-up of extremely preterm infants: the long and short of it
Pediatrics
Prematurely born children demonstrate white matter microstructural differences at 12 years of age, relative to term control subjects: an investigation of group and gender effects
Pediatrics
Microstructural and functional connectivity in the developing preterm brain
Semin Perinatol
Early school outcomes for extremely preterm infants with transient neurological abnormalities
Dev Med Child Neurol
Pattern of learning disabilities in children with extremely low birth weight and broadly average intelligence
Arch Pediatr Adolesc Med
Learning disabilities in children with very low birthweight: prevalence, neuropsychological correlates, and educational interventions
J Learn Disabil
School difficulties at adolescence in a regional cohort of children who were extremely low birth weight
Pediatrics
Preterm birth, age at school entry and long term educational achievement
PLoS One
Cited by (20)
All Care is Brain Care: Neuro-Focused Quality Improvement in the Neonatal Intensive Care Unit
2023, Clinics in PerinatologyChanges in In-Hospital Survival and Long-Term Neurodevelopmental Outcomes of Extremely Preterm Infants: A Retrospective Study of a Japanese Tertiary Center
2023, Journal of PediatricsCitation Excerpt :However, we could not exclude the possibility that the assessment of moderate cognitive impairment was affected by the change in the versions of WISC. Fourth, we did not evaluate behavioral and learning problems due to low data availability, although those problems are important for predicting later academic achievement and social outcomes.50 Fifth, we did not assess the quality of life of families and patients in this study, although biological impairments do not always translate to the perception of their lives.51
Risk Assessment and Neurodevelopmental Outcomes
2023, Avery's Diseases of the NewbornRacial and ethnic disparities in outcomes after NICU discharge: An equity-focused model
2022, Seminars in PerinatologyCitation Excerpt :Particularly in regard to SEW, longitudinal studies that survey for disparities in the development of mental health conditions are critically needed. Moreover, because developmental trajectories are shaped by the intersectional identities and contexts of each individual and modified by the home environment, parental behaviors, and outpatient therapies, long-term, recurrent evaluation is essential to identifying and dismantling racial and ethnic disparities in outcomes.129 Assessment tools, such as the Bayley Scales of Infant and Toddler Development and BITSEA, are valuable because they measure granular components of development and SEW.
Longitudinal medical needs for periviable NICU survivors
2022, Early Human DevelopmentCitation Excerpt :These risks for delay, and the fact that 83% of children in our study were receiving services 12 months after discharge despite 61% of our study population living in rural counties underscore the role of a CNFC to both identify infants who need early intervention and assist parents in obtaining services in a timely manner. As previously emphasized, NDI alone does not provide a complete representation of life quality for infants and their families [8–10,29]. While several studies have examined the complex medical needs for extremely premature infants, our study is unique in its focus on infants born in the periviable period [4,19–21,30].
Standardized motor assessments before the age of five predicting school-aged motor outcome including DCD: A systematic review
2021, European Journal of Paediatric NeurologyCitation Excerpt :As advised by the European Academy of Childhood Disability (EACD), the diagnosis of DCD preferably occurs at primary-school-age [2]. Nevertheless, a growing body of literature recognizes the importance of early detection [3,4] as DCD may have a vast impact on the quality of life [5] and is associated with important secondary problems. The lower motor competence of these children has been associated with less vigorous physical activity, higher body fatness, lower physical fitness, and lower health-related quality of life [6–8].
All authors have contributed to this article and declare no conflict of interest.