Surviving Neonatal Intensive Care: Impacts on Early Childhood

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Surviving Neonatal Intensive Care Impacts on
Early Childhood

• Anne Synnes MDCM, FRCPC, MHSc
• Director, Neonatal Follow-Up Programme
• May 24, 2007

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Our Teams

• Neonatal Follow-Up
• Mike Whitfield
• P. Hubber-Richards
• D. Johannesen
• Lynn Rogers
• Louise Kelsey
• Ruth Grunau
• C. Korol
• J. Petrie Thomas et al

• CNN Follow-Up Study
• Anne Klassen
• Shoo K. Lee
• Sarka Lisonkova
• Rebecca Sherlock

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Our Teams

• Trainees
• Sarka Lisonkova,
• Manoj Kumar,
• Shelagh Anson,
• Rebecca Sherlock,
• Chelsea Ruth,
• Peter Schmidt,
• Astrid Arkensteijn,
• Anouk Tan,
• Veronica Schiariti,
• Sara Leo

• Community Partner
• Dana Brynelsen
• IDP

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Survivor at 22 weeks gestation from elsewhere
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Intraventricular Hemorrhage
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JJ Volpe, Neurology of the Newborn 2000
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JJ Volpe, Neurology of the Newborn 2000
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Objectives

• Document the impact of NICU (Neonatal Intensive
  Care Unit) on childrens outcomes
• Survival
• Development
• Family
• Identify potential strategies to improve the
  impact on the above.

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British Columbia Births
40,651 births/yr
2,892 preterm births/yr
? 1800 NICU survivors
? 70 NFUP recruits
Statistics Canada, 2000
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CW Survival 1983-1989
Synnes, Ling, Whitfield et al. J Pediatr,
125952-60, 1994.
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NICU MORTALITY RATES ( lt 800 grams birth weight)
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CW SURVIVAL RATES 99-06
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THE LITERATURE

• Epicure study all births in the UK
  Ireland in 1995
• NICHD 1993-96 and 1996-99 500 1000
  grams birth weight
• Canada 1991-96 live births in 13 of 17 NICUs
• A Montreal NICU 1990-2000 live births

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Survival Summary
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Long Term Outcomes
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Long Term Outcome -Concepts

• Outcomes are on a continuous scale
• Definitions of disability vary!
• Age at assessment
• Ability to detect problems (eg learning
  disability)
• Different assessment tools
• Follow-up rates

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Neonatal Follow-Up Programme

• Patients recruited in the NICU
• Seen at
• 4 mos, 8 mos, 18 mos, 3 yrs, 4 ½ yrs
• Assessed by interdisciplinary team
• health and well being, growth, cognitive, motor,
  hearing vision
• Data entered in the NFUP database

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Neonatal Follow-Up Program

• Populations Studied
• Birth weight lt 800 grams (30 /yr)
• Gestation lt 25 weeks (25/ yr)
• Grade 4 Intraventricular Hemorrhage (3-5/yr)
• Severe retinopathy of prematurity (10/yr)
• (Treatment with ECMO (6/yr))
• (Congenital Diaphragmatic Hernia (5/yr))

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CHANGES IN MORTALITY AND MORBIDITY RATES OF
EXTREMELY LOW BIRTH WEIGHT ADMISSIONS OVER TWENTY
YEARS

• AR Synnes, A Arkesteijn, S Lisonkova, R Grunau,
  MF Whitfield, and CHILD,
• Vancouver, BC, Canada.

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18 Month CA Bayley
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4 ½ year WPPSI
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Standardized DQ and IQ Tests
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Types of Impairments
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Death or Disability
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Two Decades of Change in the Outcome of Extremely
Low Gestational Age

• A. Synnes, M. Kumar, M. Whitfield, R. Grunau,
  NFUP team, CHILD

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Choosing the Age and Outcome of Interest

• Dilemmas
• Want recent data that reflects current technology
  BUT
• Outcomes predictive of adult functioning
• Normal vs abnormal BUT
• People exist on a spectrum of abilities
• Outcomes expressed meaningfully

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ELGA Study Purpose

• The long term neurodevelopmental outcome of
  neonates born at 23-25 weeks gestation
• Help us in clinical decision making

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Our Study

• Neurodevelopmental outcomes for all survivors
  born at 22-25 weeks GA seen in the provincial
  Neonatal Follow-up Programme

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Outcome Definitions

• Adaptation from Epicure study
• Adapted from 6 year outcomes to 4 ½ yrs and 18
  months
• Improved definitions
• Incorporated soft findings which have an impact
  on children their families

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Definitions Severe Impairment

• Unable to walk 10 steps alone at age 4 ½ years
• Severe mental retardation (IQ lt - 3 SD)
• Profound sensorineural hearing loss not corrected
  with aids
• Legal blindness (worse than 20/200 in the better
  eye with glasses)

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Definitions Moderate Impairment

• Cerebral palsy able to walk
• IQ between 2 3 SD below the mean
• Sensorineural hearing loss corrected by aids
• Visual impairment (worse than 20/70 in the better
  eye with glasses)

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Definitions Mild Impairment

• Mild neurological abnormalities, poor
  coordination, fine motor test scores lt -2 SD
• One facet of an IQ score lt - 2SD
• Unilateral or mild hearing impairment (lt 40 db)
• Squint, needs glasses
• Speech and language deficits

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Methods

• Charts and database on all survivors reviewed by
  AS and MK to classify disabilities.
• Disability rates calculated by GA for each
  reviewer.
• Agreement measured by the kappa statistic.
• Where there was disagreement, 3rd reviewer
  classified.

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Morbidity of ELGA in BC 1983-2000 Reviewer 1
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Morbidity of ELGA in BC 1983-2000 Reviewer 2
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Inter-rater Variability
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Kappa Statistic

• Kappa for all levels 0.532
• Kappa for normal-mild 0.36

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Revision of DefinitionMild Disability

• Mild neurological abnormalities, poor
  coordination, fine motor test scores lt - 2 SD
• One facet of an IQ score lt - 2 SD
• Unilateral or mild hearing impairment (lt 40 db)
• Squint, needs glasses
• Speech and language deficits, test score lt -2 SD

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Final Disability Rates
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Summary of Morbidities Severe
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Summary No Impairments
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NICHD OUTCOMES 400-1000g

• Severe disability 13
• Any disability 54
• Worse outcome for boys (mean 10 pts less)
• No significant difference by GA
• Multiples had higher risks than singletons
• Prenatal care, antenatal steroids, higher birth
  weight, SGA, female were protective
• Active resuscitation and postnatal steroids were
  deleterious

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Teenage Outcome of Intraparenchymal Hemorrhage
with Porencephaly.

• R. Sherlock, A. Synnes, NFUP Team, CHILD

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Grade 4 IVH in 500 1250 grams birth weight

• 1983-1985 BC
• 385 admissions
• 282 survived
• 31 grade 4 IVH reported
• 14 met ultrasound criteria
• 10 survived
• 10 matched preterm controls
• 10 matched term controls

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Grade 4 IVH in 500 1250 grams birth weight

• At 4 ½ years
• All 10 cases and one control had gt 1 impairment
• 7 cerebral palsy
• 10 fine motor impairment
• 6 IQ lt - 2 SD , 2 IQ between -1 and 2 SD
• 1 hearing impaired
• 2 shunted hydrocephalus
• 2 epilepsy
• 4 odd behaviour

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Grade 4 IVH in 500 1250 grams birth weight

• School age outcome for 8/10 cases
• 4/8 with CP but all ambulatory
• 1/8 with myopia, 1/8 mod hearing impairment
• 8/8 learning difficulties with IEP
• 2/8 with Aspergers
• 2/8 with scoliosis, 1 with growth delay

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Grade 4 IVH in 500 1250 grams birth weight

• Teenage outcome for 6/10 cases
• 6/6 ambulatory
• 5/6 social issues
• 5/5 able to prepare food
• 4/6 had had a job
• None were driving
• No risk taking behaviours
• Only 1 likely to live independently

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Expressed Parental Concerns to a Neonatal
Follow-up Clinic

• P. Schmidt, A. Synnes, NFUP

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Methods

• All caregivers attending the NFUP are asked a
  standardized question about concerns about their
  child at each visit.
• Parental concern responses from Jan 1992 Dec
  2002 were categorized into health, behavior,
  development, services, continence, other or none
  and analyzed using chi square tests.

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Controls
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Premature
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CNS Abnormalities
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Conclusions

• Control group caregivers were most likely to have
  no concerns.
• Caregiver concerns vary by recruitment criteria
  and age
• Premature and ECLS most concerned about health
• CNS developmental concerns decrease over time but
  concerns about adequacy of services increase with
  age
• ROP concerns shift from health to developmental
  to behavioral with increasing age
• Health care professionals need to address these
  concerns as they change over time.
• Further study of the cause of these concerns and
  how to best relieve them is needed.

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Systematic Review of Early Intervention for
Prematurity

• Literature search was limited to
• published studies, human studies, articles
  available in English and French
• Databases searched
• PubMED (1966-June 2006)
• CINAHL (1982-June 2006)
• PsychINFO (1806-June 2006)
• Cochrane Central Register of Controlled Trials
  (1991-June 2006).

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• The search terms used were
• 1. Preterm or premature or infant-premature or
  low birth weight or neonatal intensive care or
  intraventricular hemorrhage AND
• 2. Parent-based or home-based or in-home or home
  or early intervention or early education or
  developmental intervention or head start or
  portage or partners for learning or project spies
  or intervent or therap AND
• 3. Child development or developmental outcome or
  neurodevelopment NOT
• 4. Labor or labour or pregnancy or ejaculation or
  premature ovarian failure or circumcision

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• Five criteria must be met for articles to be
  included in this review
• 1. Study subjects must include preterm (lt37 weeks
  gestational age) and/or low birth weight (lt2500
  g) infants or their families.
• 2. The study design must be a randomized or
  quasi-randomized clinical trial.
• 3. There should be a control or comparison
  group(s).
• 4. Interventions must begin after discharge from
  the neonatal intensive care unit and before the
  childs third year of life corrected age
• 5. Interventions must target improving the
  general development of the child rather than
  individual facets of development

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Results

• 337 citations
• 20 articles met our inclusion criteria
• Agreement in choice of article
• Kappa 0.81

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Results

• The interventions used encompassed parental
  education, parental support, sensorimotor,
  nutritional and child education.
• Seven out of ten of the level I and II studies
  showed statistically significant (plt0.05)
  improvement in at least one of the primary
  outcomes measured
• No consistent pattern of the effect of the
  components of the interventions

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Results-IHDP

• 7/20 articles were based on the Infant Health and
  Development Program (IHDP)
• large multi-centre trial that assessed children
  from 12 months to 18 years old.
• found significant effects in intelligence for the
  intervention group by 36 months
• minimal effects being sustained only in the
  higher low birth weight infants (2,001-2,500 g)
• No significant effects were seen in the lower low
  birth weight infants (lt2,000 g) at any age.
• 2 studies that studied secondary outcomes of the
  IHDP found that the dosage of the intervention
  received was positively correlated with
  significant effect.

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Conclusions

• Early developmental interventions influence the
  behavior, intelligence, motor development and
  mental development of preterm low-birth weight
  infants.
• However, the specific interventions that produce
  the effect are difficult to determine as many
  studies used multiple interventions.
• No economic analyses.
• Inadequate data to target interventions to
  different populations or pathologies.

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Summary of Findings

• Improved survival of extremely preterm infants
  over the last 20 years
• Significant disability of survivors 22-25 weeks
  gestation or lt 800 grams
• Severe intraparenchymal hemorrhage results in
  certain disability
• Families have different concerns at different
  stages of their childrens development
• Early intervention has some benefit but need to
  know more about what works for whom

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Where do we go from here?
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Impacts

• 1) Recommendations for management at the limits
  of viability
• 2) Parent letter at the limits of viability
• 3) Research to understand brain injury using MRI
• 4) Research to study NICU management that
  improves long term outcomes

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Conclusions - Proposals

• At 22 wks GA no resuscitation
• At 23 wks GA resuscitation discouraged
• At 24 wks GA parental choice
• At 25 wks GA resuscitation encouraged

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Outcome 22-25 Wks GA
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Conclusions - Outcomes

• At 22 wks GA no normal survivors
• At 23 wks GA 20 survival 23 mod-severe
  disabilities
• At 24 wks GA 59 survival 33 mod-severe
  disabilities
• At 25 wks GA 80 survival 14 mod-severe
  disabilities

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Impacts on Health Care

• 1)Better identification and screening of NICU
  survivors using the Test of Infant Motor
  Performance
• 2)CHILD Health BC forum to discuss how to meet
  the needs of children in the community who are
  falling through the cracks
• 3) Future planning of the NFUP

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Disability Rates Over Time 23 Weeks
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Disability Rates Over Time 24 Weeks
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Disability Rates Over Time 25 Weeks