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

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

Standardised outcome data collection

Preterm birth – Facts and figures

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 NDC @ Singleton ABMU HB Bayley @ 6mths CA Bayley @2yrs CA HSQ Non ABMU HB Recall only at 2 yrs CGA

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 disability @ 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%)

Trends in survival @ discharge

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

Type of assessment

Death or disability of those admitted to NNU – by gestation

Disability in survivors assessed n=462 (81%)

Disability in survivors assessed by gestation

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

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

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 disability @ 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%)

Outcomes in survivors assessed (extreme prematurity)

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

Comparative long-term outcomes of those admitted for intensive care 22-25 weeks Swansea 2006-2011 Epicure 1 Epicure 2 NICHD 1998-2003 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%

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

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

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