1. Health Outcomes at 2 years corrected age Singleton NICU Graduate Cohort (2006- 2011)
Neurodevelopment Follow up Team Singleton Hospital
Data Analysis : Malini Ketty
Konstantinos Mistakis
Nitin Goel
Sujoy Banerjee

2. Problems in reporting / benchmarking long term outcomes
Great variation in reporting in terms of -
Denominators
Definition of disability
Time of assessment
Methods of assessment
Risk groups
Population demographics
Service configurations

4. Standardised outcome data collection

6. Preterm birth – Facts and figures

7. Singleton Neurodevelopment FU service
<32 wks/1.5kg
Stage 2/3 HIE
Babies with abn neurology
Unable to attend NDC
Parca-r
HV Questionnaire
± SOGS report/
RG by Community Paeds/ Local Paeds
Able to attend Singleton
ABMU HB
6mths CA CA
HSQ
Non ABMU HB
Recall only at 2 yrs CGA

8. Summary outcome <32 weeks / <1500 gms
Number (%)
Admitted for intensive care
626
Survived to discharge
564 (90%)
Survived to 2 years corrected age
559 (89%)
Contactable (% of surviving children)
454 (81%)
Information available
452 (81%)
Death or Disability (MND +SND)at 2 years CGA
(% admitted for intensive care)
152 (24%)
Total 2 years CGA
(% of children assessed)
85 (19%)
Moderate Neurodevelopmental Disability (MND)
61 (13.5%)
Severe neurodevelopmental disability (SND)
24 (5.3%)
Survival free of Neurodevelopmental Impairment
367 (81.2%)

9. Trends in survival @ discharge

10. Survival at 2 years by gestation
* Outcome for infants >31 weeks is only for those with birth weight < 1.5kg

11. Type of assessment

12. Death or disability of those admitted to NNU – by gestation

13. Disability in survivors assessed n=462 (81%)

14. Disability in survivors assessed by gestation

15. Pattern of disability at 2 years
**Some children had disability in multiple domains

16. Other health outcomes System Morbidity in survivors assessed - No. (%)
Description of morbidities identified (number of children)
Congenital Malformations
31 (7)
Cardiac (11), Hypospadias (3), micropenis, Duplex kidneys, unilateral absent kidney, unilateral dysplastic kidney (2), Amniotic bands, Absent radius and thumb, Left lung sequestration, DDH (3),macrocephaly, unilateral hemifacial microsomia and microstomia
Respiratory
67(15)
Hyperactive airway (wheezy), poor exercise intolerance, tracheostomy (1), pulmonary hypoplasia (2)
Gastrointestinal and Nutrition
43(10)
Poor growth, GORD, Special diet (10), short gut syndrome(2), gastrostomy fed(2), Oesophageal atresia with fistula, lactose & CMPI intolerance
Neurology other than CP
13 (3)
Ventricular reservoir (3), Seizure (3) - 2 febrile &1 idiopathic; Down syndrome, Uniparental disomy Chr. 6, PW syndrome, Absent left cerebellar hemisphere, Dandy walker malformation, posterior fossa encephalocele with colpocephaly and absent septum pellucidum
Hearing ( moderate to severe impairment only)
9 (2)
Moderate loss fully corrected (8)
Severe loss - not fully correctable (1)
Vision (Moderate to severe impairment)
1(0.2)
Blind (1)
Other visual impairment
27(6)
Refractive errors requiring glasses but fully correctable , squint, nystagmus, astigmatism, esotropia

17. Cumulative outcome Extreme prematurity (22-25 weeks)
Number (%)
Admitted for intensive care 86
Survived to discharge
53(62%)
Survived at 2 years corrected age
52 (60%)
Information available (% of survivors)
43 (83%)
Death or Disability (MND +SND)at 2 years CGA
(% admitted for intensive care)
48 (56%)
Total 2 years CGA
(% of children assessed)
14(32%)
Moderate Neurodevelopmental Disability (MND)
10(23%)
Severe neurodevelopmental disability (SND)
4 (9%)
Survival free of Neurodevelopmental Impairment
29 (68%)

18. Outcomes in survivors assessed (extreme prematurity)

19. Survival of infants admitted for intensive care ( 22-26 weeks)

20. Comparative long-term outcomes of those admitted for intensive care
22-25 weeks
Swansea
Epicure 1
Epicure 2
NICHD
Time of assessment
24 months
30 months
27-48 months
18-22 months
Survival free of disability
68%
50%
71%
60.5%
Moderate disability
23%
26%
13%
25.7%
Severe disability 9%
24%
16%
13.8%

21. Conclusions <32 weeks or <1.5 kg birth weight infants
89% of infants admitted for intensive care survived
Health outcome was available for 81% of survivors, 90% through standardised assessment
Combined death or disability was 24% (19- 29%)
4 out of 5 (81%) survivors assessed were free of moderate to severe disability
Serious visual impairment was rare

22. Conclusions Extreme prematurity (22-25 weeks)
Overall 60% of infants admitted to intensive care survived.
56% admitted for intensive care either die or have moderate to severe disability
Approximately 2 out of 3 (68%) of the survivors assessed were free of moderate to severe disability at 2 years

23. Conclusions: Benchmarking
Cumulative survival and long term outcomes were very comparable to major studies undertaken in this population across the world and in the UK