Developmental Follow-up of Pre-term Infants at High Risk for Delays

By Sheena L. Carter, Ph.D.

If your baby experienced difficulties at birth that increase his or her chances for developmental difficulties, you may have been invited to participate in a high-risk follow-up program. Follow-up programs exist to track the progress of children who have an increased likelihood of developmental problems that tend to appear gradually over the first several years of life. These developmental problems include major handicapping conditions, such as cerebral palsy, mental retardation, blindness and deafness, but also include more common issues like developmental delays, growth problems, and various types of sensory impairment (vision and hearing problems). Early identification of developmental difficulties is believed to be critical to the success of treatments for these conditions.

Developmental Screening
All children should have some developmental screening periodically throughout childhood. Most commonly, children are screened during routine visits to their pediatrician prior to school age and also through schools at preschool and/or kindergarten entry. General pediatricians can provide satisfactory screening using a mass screening tool (for example, Abbreviated Denver Developmental Screening Test, Revised Parent Developmental Questionnaire, etc.) designed to identify delays across major areas of development. Teachers may use tests of school readiness which screen for children who are not ready for the preschool or kindergarten. Vision and hearing screening tests are also usually available through the pediatrician’s office and through local health departments, and these are required for school entry in the United States. Developmental screening of all children, including vision and hearing screens, is important in identification of potentially handicapping conditions that may be prevented or remediated if addressed early.

Which Children Need Developmental Follow-up?
Children who are considered to be at “high-risk” for developmental problems and those already identified as having developmental concerns require more extensive screening than children at lower risk. Close monitoring of development, together with coordination of treatment for any emerging problems, is often referred to as “developmental follow-up.” Children who are at increased risk for developmental problems include those born very prematurely or at very low birth weight, as well as those with known neurological abnormality or at birth and those who are very ill during the newborn period. While most prematurely born children and many children with other serious neonatal conditions eventually develop beyond any problems associated with their early experiences, frequently there are developmental issues that need to be addressed as early as possible in order to prevent further complications (such as growth problems in children with feeding difficulties and language delays in children with hearing loss).

Who Can Provide Follow-up Services?
Pediatricians may incorporate developmental follow-up into their routine well-child care. Administration of a brief screening instrument requires an additional 10 - 15 minutes of examination time. More time is required for children who do not pass an initial screening. Coordination of additional tests, specialty services, and therapies, is necessary when delays or impairments are identified. Many physicians find it difficult to provide comprehensive screening, particularly with the currently increasing time demands required by third party payers. When problems are identified on initial screening, pediatricians may choose to refer the family elsewhere for further evaluation and follow-up. The family may be referred to a local early intervention program, a child development clinic, or to a specialized follow-up program for high-risk children.

High-risk follow-up programs, where they are available, are specifically designed to monitor the development of children who are at increased risk for emerging delays. Unlike traditional child-development clinics, which address problems in children who have already been identified as having a delay or disorder, follow-up clinics focus on identifying problems as they emerge. Some follow-up programs are funded primarily through research grants and exist primarily to collect data on outcomes related to various neonatal conditions. Some are more service oriented, with public or private funding to address the developmental needs of high-risk infants.

What Should Follow-up Involve?
Screening tests designed for initial screening in the general population should not be relied upon for the identification of delays in children known to be at high risk for developmental problems. When used with groups of high-risk children, such tests do not have a satisfactory rate of accuracy in identifying developmental problems. It is also not appropriate to use screening tests to “rule out” problems about which parents have voiced a concern. That is, passing a screening test should not be used as an indication that there is not problem when there is cause for concern due to the child's early history and/or parent report of unusual behavior. When children are known to be at high-risk for developmental problems or when parents have noted something worrisome about their child, more in-depth evaluation is needed.

At a minimum, developmental follow-up for high-risk infants should involve periodic screening for sensory impairment, developmental delays, and any other condition for which an individual infant is considered to be at increased risk. Comprehensive follow-up involves close evaluation of medical, psychological, and social factors in addition to assessment of developmental progress. Children who are suspected of having had neurological injury will need close evaluation of neurodevelopmental functioning to investigate the possibility of long-term impact as their nervous systems mature. The follow-up team also must be able to integrate information from the various specialty physicians, therapists, and any other professionals working with children in follow-up. Prompt recommendations regarding further evaluation, treatment options, and the need for continued follow-up are essential.

Summary
Developmental follow-up is advised for children at high-risk for developmental difficulties. No single, brief developmental screening test exists that can accurately identify all problems. For children with complicated medical histories or early developmental delays, follow-up may be very time-consuming and expensive. Periodic re-evaluation is important during infancy and early childhood as most developmental difficulties emerge slowly over time. Medical history, current health, and rate of progress must be considered when interpreting any developmental test results. Comprehensive follow-up includes ongoing communication with families and with other professionals to ensure that each child receives the most appropriate interventions as early as possible.

Developmental follow-up can be provided through a number of different means, including high-risk follow-up clinics. High-risk follow-up clinics vary tremendously in size, resources, and focus. In general, the focus of these clinics is on identification of emerging problems related to neonatal risk factors. They may be a valuable resource for parents of children who have problems related to neonatal conditions which many health care providers and even early intervention specialists see infrequently.

Sheena L. Carter, Ph.D., is an applied developmental psychologist specializing in infant development. She is an assistant professor in the Department of Pediatrics, Division of Neonatology, with Emory School of Medicine in Atlanta, Georgia. She is part of a multidisciplinary team which provides developmental follow-up services to high risk children served by the Emory Regional Perinatal Center.

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