Transcript High Risk Newborn and Developmental Follow-Up

Follow-Up of the
High Risk Neonate
Robert E. Lyle, M.D.
Associate Professor of Pediatrics,
Co-Medical Director, ACH NICU
Co-Medical Director, ACH Medical Home Program
Why Do we Need Specialized
High-Risk Newborn Follow-up?
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Premature infants and those with complex disorders
often require special treatment during follow-up
compared to more mature premature infants.
Many infants with major malformations and therefore
special needs are now surviving compared to 20-30
years ago.
The Council on Graduate Medical Education and the
American Board of Pediatrics have reduced the time
that pediatric residents train in the NICU and
consequently, their knowledge about follow-up care
of NICU graduates is extremely limited
Discharge Criteria
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Discharge criteria differ depending on the
infant’s history and diagnoses.
In general, the following should apply:
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Adequate weight gain of 15-30 g/day over the week prior to discharge
Weight gain should have occurred with infant in an open crib and with
maintenance of a normal body temperature
Ability to feed without distress, either orally or by gastrostomy tube and
if by mouth should take less than 20 minutes per feed
No significant apneas/desaturations/bradycardias in the week leading
up to discharge
No major changes in medications/oxygen/feedings in the week prior to
discharge
Ability to pass a car seat test accompanied by parents demonstrating
appropriate use of the car seat
Discharge Criteria
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Parents have demonstrated competency in providing feeds. Parents
must also be competent in drawing up and administration of any
medications. Likewise, parents must be able to accurately mix the
formula and ideally meet with a nutritionist for instruction in special
supplements.
Parents have demonstrated the ability to provide CPR following
completion of a CPR class.
If technical devices are needed such as monitors, oxygen etc., parents
have been adequately trained and have demonstrated competence in
the use of such equipment. All medical equipment required in the
home should be in place and working.
Routine metabolic/newborn screening should have been completed and
the results made available in the medical record.
Hearing screen should have been completed and follow-up, if needed,
arranged prior to discharge.
Vision screening, if needed, should have been completed and followup, if needed, arranged prior to discharge.
Discharge Criteria
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In infants requiring prolonged stays,
administration of age-appropriate
immunizations should occur and the parents
should receive a record of such
immunizations.
If appropriate, administration of palivizumab
should occur prior to discharge and follow-up
dosing arranged.
An assessment of the home environment
should be undertaken and an on-site
evaluation of the home may be necessary.
Pre-discharge Planning for Infants
Requiring Special Care Needs
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Oxygen-dependent infants with bronchopulmonary
dysplasia should have stable oxygen saturations
measured by pulse oximetry at or above 95% in a
stable or reducing flow rate for at least two weeks
prior to discharge.
Infants having had bowel resection resulting in short
gut syndrome requiring intravenous alimentation at
discharge should have follow-up with pediatric
gastroenterology and appropriate orders/plans for
maintenance of outpatient parenteral nutrition. In
addition, parents require instruction in the care of the
central venous line as well as signs/symptoms of
infection with an emergency plan for follow-up, if
needed
NICU Staff Assessment
Prior to Discharge
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The parents have adequately performed
all tasks.
The parents have exhibited minimal stress
in caring for their infant.
The parents and the home environment
are suitable such that neither neglect nor
physical abuse is likely to occur.
Prior to Leaving the Hospital
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A program of parental support such as home health
nurse visits should be ordered, especially to monitor
weight gain
Follow-up with a primary care physician (PCP)
scheduled. Ideally direct communication between the
discharging physician and PCP should occur prior to
discharge and a discharge summary should be sent
to the PCP on the day of discharge.
To avoid potential fragmentation of care, discharge
on weekends, especially of infants with special needs,
should be avoided.
All follow-up appointments with specialists should be
made prior to discharge
Follow-up care by the
Primary Care Provider (PCP)
The major goals of the pediatrician
or family practitioner providing
care to an NICU graduate are to:
 Provide ongoing assessment of growth
and nutritional intake
 Deliver preventive care
 Periodically perform
neurodevelopmental assessments
Growth Assessment
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Weight, length and head circumference should be plotted on
appropriate growth chart after correcting for the gestational age
at birth.
PCP must be alert to signs of growth failure with particular
emphasis on head growth as it is a predictor of future outcome.
Certain conditions place infants at risk for growth failure and
include:
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Bronchopulmonary dysplasia
Central nervous system injuries such as severe intraventricular
hemorrhage or birth
Asphyxia
Congenital heart disease
Short-gut syndrome
Esophageal/intestinal anomalies
Renal disease
Inborn errors of metabolism
Chromosomal and/or major malformation syndromes
Origins of Growth Failure
Must Be Explored
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Failure to feed versus failure to thrive?
Increased work of breathing?
Choking/aspiration due to swallowing dysphagia?
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Must ask: “How long does it take for the child to take a bottle?”
If feedings routinely take > 20 minutes may need further evaluation for
swallowing dysfunction
Some infants have accelerating growth patterns after discharge and
head growth commonly exceeds weight gain and linear growth.
(Must still be alert to posthemorrhagic hydrocephalus as a cause for
excessive head growth after discharge)
Catch-up growth may not be complete until 2.5 - 3 years of age.
Some small for gestational age infants (SGA) may experience a
rapid growth in body mass but a substantial number have little
catch-up growth. (May require referral to a pediatric endocrinologist
for recombinant growth hormone therapy)
Nutritional Assessment
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Nutritional assessment begins with a complete history and physical
including
anthropometric measures (weight, length, head circumference) and
vital signs.
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Assess fluid intake and calculate calories consumed.
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Normal weight gain should average 15 - 40 g/day in the first three to four
months after birth and decline to approximately 5 - 15 g/d by age 12-18
months.
The increase in head circumference should range from 0.7 - 1 cm/wk.
Most premature infants require 110 - 130 kcal/kg/day to grow.
To accurately assess intake, a home feeding diary may be helpful.
Assess if the parents are making the formula correctly, especially if
supplements are added to achieve greater than 20 calorie / ounce
concentrations.
If available, follow-up with a pediatric dietitian and a specialized followup clinic (ACH High Risk Newborn Clinic) is ideal for assessing and
managing infants with difficult growth and nutritional problems.
Nutritional Assessment
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If intake is a problem, observation by an occupational therapist
trained to recognize feeding problems may be indicated and should
have been part of the evaluation prior to discharge.
If not:
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Cineradiography of the suck and swallow mechanism may be indicated.
Tests to exclude gastroesophageal reflux may be needed.
Thickening of feeds may be helpful.
Characteristics of stool passage and the composition of the stools
may also be helpful in assessing the adequacy of nutritional intake.
Be alert to signs of malabsorption:
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Presence of oily, mucoid, explosive or watery stools may indicate
malabsorption.
Referral to pediatric gastroenterology is indicated.
Provision of Preventive
Care
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Provision of preventive care is an essential
part of care by the PCP and consists of the
following:
Prevention of infectious diseases through
immunization - Palivizumab (ANGELS
neonatal guidelines)
Education regarding safety
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Use of car seat
Sleeping position - “Back to sleep”
Evaluations of vision and hearing
Neurodevelopmental
Evaluation
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Should be part of all examinations
Assessment of muscle tone and presence of primitive
reflexes
Referral for therapies as appropriate
Part H of the Individuals with Disabilities Act (IDEA)
mandates early intervention for eligible at risk
children from birth to age 3 years.
Reviewed in the AAP statement entitled “Pediatric
Services for Infants and Children with Special Health
Needs” [RE9318].
Be alert to special problems such as torticollis and
plagiocephaly.
Review attainment of milestones corrected for
gestational age
Risks of Disability
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The following is an estimate of the risks of disability in infants
with birth weights less than 1500 g:
Incidence of a disability
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Type of disability
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None (35-80%)
Mild-to-moderate (8-57%)
Severe (6-20%)
Mental retardation (10-20%)
Cerebral palsy (5-8%)
Blindness (2-11%)
Deafness (1-2%)
Psychomotor testing using screening tools such as the Denver II
Developmental Screening Test and/or the Bayley Scale of Infant
Development are helpful to identify infants at risk
High Risk Newborn and
Developmental Follow-Up:
Who Needs It?
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Birth weight less than 1000 grams
Medical history or conditions consisting of one of the following:
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Bronchopulmonary dysplasia (O2 requirement at 36 weeks PCA)
NEC requiring surgical intervention
IVH Grades III, IV and/or PHHC and/or PVL
Abnormal neurologic exam at time of discharge and/or microcephaly
Seizures related to IVH or asphyxia
Meningitis
Hearing and/or vision deficits
Persistent pulmonary hypertension of the newborn requiring high frequency
ventilation +/- inhaled nitric oxide
Pathologic jaundice requiring exchange transfusion
Any patient requiring ECMO
Any patient with HIE requiring head cooling therapy
Uncomplicated patients weighing less than 1500 grams without local PCP
follow-up available or with significant social issues placing them at high-risk
(e.g. drug exposure)
ACH High Risk Newborn
Clinic
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Evaluations performed in the Arkansas Children’s
Hospital High Risk Newborn Clinic are as follows:
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Assessment of growth and nutrition (Review by a pediatric
dietitian)
Thorough review of interval history, illnesses and medication
usage
General physical examination
Limited neurodevelopmental evaluation
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Mullen Developmental Screen
Speech assessment
Assessment of the psychosocial environment
Determination of needed interventions and services
with a referral letter back to the PCP
BPD Follow-up
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Close follow-up is needed
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Home health visits/PCP
High Risk Newborn Clinic/Pulmonary Clinic
Significant risk of rehospitalization within the
first year
“Comprehensive” Follow-up care can reduce
life-threatening illnesses and PICU admissions
(Broyle et al, JAMA 2000)
Optimize growth and development
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Cautious weaning of oxygen, follow RVH
Follow-Up of Infants with
Bronchopulmonary Dysplasia
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Bronchopulmonary dysplasia (ANGELS Neonatal
Guideline)
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Weaning of oxygen should be under the supervision of a
high-risk neonatal follow-up program and/or a
pulmonologist.
For those infants receiving diuretics, periodic evaluation of
electrolyte status is indicated.
Infants with BPD may require 120-150 kcal/kg/day for
weight gain.
Follow-up EKGs to assess resolution of RVH may be needed
For those on extended oxygen therapy, a sleep study may be
indicated
NEC/Short Gut Syndrome
Follow-Up
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Infants having had bowel resection resulting
in short gut syndrome requiring intravenous
alimentation at discharge should have followup with pediatric gastroenterology and
appropriate orders/plans for maintenance of
outpatient parenteral nutrition. In addition,
parents require instruction in the care of the
central venous line as well as signs/symptoms
of infection with an emergency plan for
follow-up, if needed.
ACH Medical Home
Program for Special
Needs Children
Infants and Children with Special
Health Care Needs: An Evolving
Problem
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Increasing percentage of infants being
discharged to home on oxygen and other
technology with limited follow-up
Increasing survival of infants into childhood
with complex medical conditions
High percentage of hospital readmissions
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CY 2002:25%
Increasing frustration of parents/caregivers
and PCPs over fragmented care
Neonates with Complex and
Chronic Conditions: 2004
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BPD
Omph/Gastros
CDH
n
102
35
9
Survival(%)
93(92)
31(88)
7(78)
LOS
60
48
50
Charges
$25,656,099
$7,207,082
$4,287,903
Benefits of a Medical Home Program
for Special Needs Children
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Reduced hospital admissions
Reduced length of hospital stay
Reduced inpatient charges
Reduced emergency department visits,
Improved patient satisfaction
Enhanced opportunities for outcomebased clinical process improvement
The Council on Children with Disabilities of the American Academy of Pediatrics, 2005
ACH Medical Home Program for
Special Needs Children
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Goals of the Program
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Assist in meeting general healthcare needs
Facilitate access to subspecialty care and coordinate planning
and communication of therapies and care plans
Enhance communication between medical providers – ACH
inpatient, ACH subspecialists and local primary care providers
Oversee nutritional planning
Coordinate developmental, rehabilitative, speech and
psychological evaluations and therapy
Provide resources for non-medical needs: educational/family
support/community services
ACH Medical Home Program
for Special Needs Children
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Target Population
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Infants and children with complex medical
conditions that require a multitude of subspecialty
follow-up care
Magnitude of the Problem
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CY 2004: 69 children met such criteria
Had a total of 180 hospitalizations
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Range of 1-8 re-admissions with an average 2.6
8643 patient days
Charges in excess of $42 million dollars
ACH Medical Home Program
for Special Needs Children
Target Population
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Infants and children with technology dependence
including oxygen and gastrostomy feeding tubes
High risk newborns including those diagnosed with:
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Moderate – Severe Brochopulmonary dysplasia
Severe intraventricular hemorrhage (Gr III/IV) and posthemorrhagic hydrocephalus (+/- shunt)
Necrotizing enterocolitis with resultant short-gut syndrome
Major congenital anomalies such as diaphragmatic hernia
Genetic syndromes associated with disabilites
Hypoxic-ischemic encephalopathy
Neurologic disorders associated with significant developmental
disabilities
Children, aged 0-3, surviving serious illness and injuries
with extended PICU stays and resultant long-term
morbidity