what is next for preterm infants? l melissa r. johnson, ph.d. l wakemed l november 2008
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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 certain- symmetry
matters Hypoxic-ischemic encephalopathy (HIE) Cerebral palsy (CP) / Chronic encephalophy
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
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/abinitio/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!
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