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WHAT IS NEXT FOR PRETERM 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.

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WHAT IS NEXT FOR PRETERM INFANTS?

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  1. WHAT IS NEXT FOR PRETERM INFANTS? • Melissa R. Johnson, Ph.D. • WakeMed • November 2008

  2. DEVELOPMENTAL CHALLENGES • Medical • Social • Environmental

  3. MEDICAL ISSUES • Respiratory issues • Respiratory Distress Syndrome (RDS) • Chronic Lung Disease (CDL) • Bronchopulmonary Dysplasia (BPD) • Pneumothorax

  4. 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

  5. VISUAL ISSUES • Retinopathy of prematurity (ROP) • Cause still debated • Therapies still improving • Close follow-up often critical

  6. Other medical issues • Necrotizing enterocolitis (NEC) • Other infections • Other causes of prolonged illness, poor nutrition

  7. PSYCHOSOCIAL CHALLENGES • Poverty and other chronic stressors • Substance abuse • Maltreatment history in family of origin • Domestic violence • Parental mental illness

  8. Attachment difficulties • Other family and community stresses • Child care • Siblings • Language • Transportation • Education

  9. ENVIRONMENTAL CHALLENGES • NICU environment • Sound, light, handling, positioning, parental access • Loss of expected environment for brain development

  10. 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

  11. 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

  12. 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

  13. 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

  14. ELBW OUTCOME AT 8 YEARS • 156 survivors 501-1000 compared to matched controls in Ontario, CN • Used multiattribute health status classification

  15. 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

  16. 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)

  17. 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

  18. 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

  19. 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

  20. 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

  21. 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

  22. 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 .

  23. 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

  24. 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

  25. 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

  26. 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

  27. 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

  28. 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

  29. 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

  30. Preterms had lower rates of ETOH, drugs, pregnancy, even without impaired group. • Hack et al, NEJM, 2002

  31. 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

  32. 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

  33. 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

  34. 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

  35. 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

  36. 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

  37. 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

  38. 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

  39. 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

  40. 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

  41. 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

  42. 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

  43. 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

  44. 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)

  45. 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

  46. 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

  47. 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

  48. 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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