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.
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
Which Children Need Developmental
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.
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.
© 1998, 2002 Copyright Dr. Sheena L. Carter
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.
Pat Linkhorn is the .....