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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.
© 1998, 2001 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. |
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