Transcript OUTCOME FOR VERY PREMATURE INFANTS

WHAT IS NEXT FOR
PRETERM INFANTS?
Melissa R. Johnson, Ph.D.
 WakeMed


November 2008
DEVELOPMENTAL
CHALLENGES
Medical
 Social
 Environmental

MEDICAL ISSUES

Respiratory issues
» Respiratory Distress Syndrome (RDS)
» Chronic Lung Disease (CDL)
» Bronchopulmonary Dysplasia (BPD)
» Pneumothorax
NEUROLOGIC ISSUES

Intraventricular hemorrhage (IVH)
» Grades I-IV (some don’t use)
» Outcome NOT certain
Periventricular leukomalacia (PVL)
 Very worrisome but NOT certainsymmetry matters
 Hypoxic-ischemic encephalopathy
(HIE)
 Cerebral palsy (CP) / Chronic

VISUAL ISSUES

Retinopathy of prematurity (ROP)
» Cause still debated
» Therapies still improving
» Close follow-up often critical
Other medical issues
Necrotizing enterocolitis (NEC)
 Other infections
 Other causes of prolonged illness, poor
nutrition

PSYCHOSOCIAL
CHALLENGES
Poverty and other chronic stressors
 Substance abuse
 Maltreatment history in family of origin
 Domestic violence
 Parental mental illness

Attachment difficulties
 Other family and community stresses

– Child care
– Siblings
– Language
– Transportation
– Education
ENVIRONMENTAL
CHALLENGES

NICU environment
» Sound, light, handling, positioning, parental
access

Loss of expected environment for brain
development
DEVELOPMENTAL TRENDS
IN OUTCOME
Literature keeps growing
 Babies are surviving smaller, younger
 Doctors have more tools to help

» High frequency ventilators, better CPAP
» Artificial surfactants
» Better nutrition strategies
A look at the research
Complicated, but still helpful
 Rapidly evolving
 Variability- numbers, SES, percent
followed, location, size at birth, age at
follow-up, source of FU info, control
group, etc etc etc
 Below: a few of best studies from 90’s
and some from 2000-2008

20 MO. OUTCOME OF ELBW
114 premies from 500-750 g
 Born 1990-1992; compared to 82-88
 Survival from 600-700 grams
increased from 23% to 43%
 20% MDI <70, 10% CP

–
Hack et al, JAMA vol. 276, 1996
PATTERNS OF COGNITIVE
DEVELOPMENT
Looked for patterns - under 1500 g
N=203 to age 6
 37% stayed in average range
 42% declined from average to below
average- mostly after age 2
 Only 8% improved

–
Koller et al, Pediatrics vol 99, 1997
ELBW OUTCOME AT 8
YEARS
156 survivors 501-1000 compared to
matched controls in Ontario, CN
 Used multiattribute health status
classification

14% had no functional limitation; 58%
had reduced function in one or more
areas; 28 % had three areas affected.
Controls: 50%, 48%, 2%
 Areas most likely to be affected:
cognition, sensation

–
Saigal et al, J. Peds, vol 125, 1994
ELBW BEHAVIORAL
OUTCOME AT 8 YEARS
81 survivors 800 g or less; matched
controls
 Lower global IQ’s, fm skills
 Trouble with persistence, easily
discouraged, needed much adult
support and approval
 “Subtle organizing problems”

» Grunau (quoted in Aug 1995 Peds News)
MATERNAL COMPLIANCE
AND OUTCOME
152 infants under 1000 g; 110
compliant, 42 noncompliant w/ EI fu
 MDI scores: compliant = 75.59
noncompliant = 68.24
 PDI scores: compliant = 82.97
noncompliant = 74.54

–
Bonnet et al, Pediatrics supplement, 1998
ELBW OUTCOME AT 18 MO.
1151 babies 401-1000 g.
 Only 1/3 under 900 g had MDI >85
 60% 901-1000 g > 85
 Neuro exams, walking, etc better
 Best predictors: IVH, BPD, family ed

–
Vohr et al, SPR abstract, 1998
OUTCOME FOR SWEDISH
ELBW CHILDREN
633 babies followed prospectively
 survival over 23 wks- 59%
 362 assessed at 36 mo
 25 had CP, 16 blind
 86 % functionally nl- range from 69 %
for 23-24 wks to 91 % for >27 wks

–
Finnstrom et al, Acta Paediatrica 1998
SCHOOL-AGE OUTCOME
68 <750 g; 65 between 750-1499 g
 Neonatal risk index predicted outcome
better than social risk index (surprise)
but proximal social risk more sig.
 Of hi NRI kids, only 15 % had IQ >85
 Of lo NRI kids, 33 % had IQ > 85
 38/26 % had behavior problems

–
Taylor et al, Devel. & Behav Peds, 1998
UNDER 801 G- AGE 5
OUTCOME
Compared survivors from ‘83-’85 vs
‘86-’89 (% survival the same- more
under 600 g)
 No sig. difference between cohorts
 21% had severe disabilities
 Sig. factors: ICH and SES

–
Kilbride & Daily, J. Perinatology, 1998
OUTCOME FOR 12 YO
VLBW CHILDREN
138 children under 1250 g and 93
under 1500 g born from ‘80-83 (UK)
 Compared to matched controls, 8 pts
lower IQ- mainly due to Performance .

12% of VLBW and 7% of controls
below 70. Gaps widened from age 6 to
12.
 35% of VLBW needed remediation
(12% of controls)

–
Botting et al, Devel Med Child Neuro, 1998
TEEN SCHOOL OUTCOMES
150 500-1000 g survivors, controls
 Born 1977-1982
 Neurosensory impairments in 28 % of
ELBW, 1% of controls
 Mean IQ = 89
 Spec. Ed or retained: 58 % vs. 13 %

Saigal et al, Peds, 2000
OUTCOME FOR ELBW
TODDLERS

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
1151 4001-1000 g survivors in NICH network,
seen at 18-22 mo, b. 1993-1994 (78%) f/u
25 % had abnl neuro exam
37 % Bayley II MDI < 70
29 % Bayley II PDI , 70
9 % vision impairment
11 % hearing impairment
» Vohr et al, Pediatrics, 2000
MORE ELBW TODDLERS
Born 92-95, seen at 20 mo
 24 % major abnormalities
 42 % Bayley II MDI , 70
 Neurosensory abnormalities and/or low
MDI = 48 %

» Hack et al, Seminars in Neonat, 2000
SWEDISH LBW OUTCOME
AT 10
61 of 65 10 y.o. survivors b. at under 29
wks compared to controls (b. 85-86)
 Mean IQ of preterms = 90; controls =
106
 38 % of preterms below grade level
 32 % had behavior problems; 10 % of
controls

20 % had ADHD, 8 % of controls
 30 % in SE, 1.6 % of controls

» Sternqvist, Ab Initio Intl, 2001-2002
www.childrenshospital.org/brazelton/abiniti
o/art2.html
VLBW OUTCOME AT 20
242 survivors from 1977-1979 , controls
 HS grads: 74 % of preterms, 83 % of
controls
 Men, but not women, less likely to
continue studies
 10% had neurosensory impairments;
 1 % of controls


Preterms had lower rates of ETOH,
drugs, pregnancy, even without
impaired group.
» Hack et al, NEJM, 2002
15 YR F/U OF PRETERMS
AFTER SURFACTANT
< 29 wks b. 1985-87 followed at 7 and
14 (126/132)
 At 7, 31 % nonimpaired; 21 % severe
impairment; 32 % in self-contained SE
19 % CGI < 70; 15 % CP

As teens, CP same; 29 % SE; 19 %
had 1 severe disability; 41 % had no
impairment.
 Conclusion: even with surfactant, sig
minority will have ongoing compromise
 D’Angio, Pediatrics, Dec. 2002

Chance for improvement?!
Longitudinal data on PPVT-R on 296
children under 1250 g
 Scores increased from 88 at 36 months
to 99 at 96 months; similar for IQ verbal
and FS scores
 Mat ed and 2 parents helped
 NOT for children with worse IVH

» Ment et al., 2003
Academics at ages 11 and 17
Detroit area preterm children tested on
Woodcock-Johnson
 3-5 point deficits independent of family
factors and urban/suburban
 At 17, preterms 50% more likely to
score below the mean in both reading
and math ; cog deficits noted at age 6

Breslau, Paneth & Lucia, 2004
ELBW infants with NL HUS
Babies born ‘95-’99 under 1000 g with
NORMAL head ultrasounds
 Nearly 30% had either CP or MDI ↓ 70
 Lung problems (pneumothorax, long
vent) and low SES were related

» Laptook et al, 2005
Behavioral outcomes
Large French study compared preterm
to term children at age 3
 Preterms had much higher levels of
behavior problems; Children in “high”
total range- 20% of preterms, 9% of
term.

» Delobel-Ayoub et al, 2006
Emotional regulation and
development
ER scale from Bayley II: attention,
frustration tol, coop, activity,
hypersensitivity
 Income and ER influenced MDI
 Poorer ER associated with lower MDI
even controlling for income

» Lowe, Woodward & Papile, 2005
Outcome for families
Study of impact of ELBW birth on
families at school age
 Impact greater in ELBW than controls
 High parent/SES risk, neurodevel
outcome, and functional impact of
chronic conditions predicted greatest
family impact

» Drotar et al, 2006
NEC and development
Babies under 1000 g vs controls
 More babies with NEC had lowered PDI
 Entire preterm group had lower MDI
compared to controls

» Salhab et al., 2004
Infections and development
Multicenter study of children under
1000 g
 Infections predicted more CP, lower
MDI and PDI scores, and more vision
impairment

» Stoll et al, 2004
How many domains?
Under 30 week sample of 157 children
seen at age 5 (Dutch)
 39% “normal”
 17% single disability
 44% multiple disabilities

» Van Baar et al., 2005
8 year f/u of under 1000 g
Born ‘92-’95, 219 children, controls
 Need for services: 65% vs 27%
 Functional limitations: 64% vs 20%
 CP 14% vs 0, IQ ↓ 85 38% vs 14%
 Sig impact on motor skills, academics,
adaptive, health

» Hack et al, 2005
What about bigger premies?
Study of 32-33, 34-36, and term babies
 Followed K-5
 Bigger premies had a range of
academic delays compared to term;
more special ed, more teacher
concerns

» Chyi et al, 2008
Prematurity and later mental
health
F/U to teens of non-handicapped
preterms- increase in psych sx, esp
anxiety and depression (Schothorst et
al, 2007)
 Lg group in adulthood- increased
depression (Nokumura et al, 2007)
 LBW predicted depression in NC teen
girls, not boys (Costello et al, 2007)

BUT some GOOD news
Compared group of 501-1000 g with
term births at ages 22-25 (Canada)
 90% follow up
 Similar % grad HS (82-87%)
 33-34% in post-secondary ed
 Except for disabled, similar % working
or in school, living on own, married,
parents

» Saigal et al, 2006
WHAT WE DON’T KNOW
AND WHY
Why disability rates have stayed high
 How any individual baby will do, as
specifically as families need
 For certain, what interventions are most
effective, when and why

WHY SO HARD TO
ANSWER?
Research varies as to age and size
group, timing of follow-up, size of N,
use of controls, % followed, instruments
used, definitions
 Research published now based on
babies born several years ago
 Interaction of medical, social and
environmental variables

Inconsistency of early intervention
 Inconsistency of special ed eligibility,
definitions and services


CONCLUSION: THESE BABIES ARE
SPECIAL. LET’S OFFER AS MUCH
HELP AS POSSIBLE!