Neonatal Mortality of VLBW in Europe The Portuguese Experience Portuguese VLBW Infants Network Hercília Guimarães herciliaguimaraes@gmail.com Brussels, December 2009

10 millions inhabitants 100000 births / year Universal National Healthcare

Perinatal, late fetal and early neonatal mortality rate, Perinatal Care System VLBW Register Perinatal Early neonatal Late Fetal Perinatal, late fetal and early neonatal mortality rate, Portugal 1980-2005 3

Perinatal, neonatal and infant mortality evolution 1995 1996 1997 1998 1999 2000 2001 2002 2003 2004 2005 2006 2007 2008 Infant Mortality (‰) 7.4 6.9 6.4 6.0 5.6 5.5 5.0 4.1 3.8 3.5 3.3 3.4 Perinatal 9.0 8.4 7.2 6.8 6.2 5.1 4.4 4.3 4.6 4.0 Neonatal mortality 4.7 4.2 3.7 3.6 2.9 2.7 2.6 2.2 2.8 2.0 2.1 Foetal morality 5.4 3.1 3.2 5

Portuguese Perinatal Healthcare Policy National Committee for mother and child healthcare (1989) Maternities with < 1500 deliveries/year were closed Hospitals were classified as Level II and Level III Functional Coordinating Units connect the Hospitals to the Primary Healthcare Centers The post graduation of Paediatricians in Neonatology originated the creation of the Special Studies on Neonatology Cycle. Transport in utero was recognized as the best Neonatal transport – INEM, was created as an alternative.

Intermediate Neonatal Care Local Health Center Level II Hospital Intermediate Neonatal Care Local Health Center Level III Hospital Neonatal Intensive Care Unit Local Health Center Level II Hospital Intermediate Neonatal Care Local Health Center 7

Level II-27 Level III-21 (including islands) Public hospitals with perinatal care Level II-27 Level III-21 (including islands) Intensive care beds by center 5-13 >50 VLBW infants 10/21 Surgical centers Surgeries/year:2>70;1>40 Cardiac centers 2 south;1 center;1 north 8

National Neonatal Transport 3 centers placed in level 3 hospitals Centralized information system Ambulance equipped with a NICU, and nurse and doctor with expertise in neonatal transport North Center South

Neonatal Mortality Portugal 2007/ VLBW Network < 32weeks 49% of neonatal mortality VLBW Network 1994-2009 Neonatal Society 10

Portuguese VLBW Infants Network - 1994 Main Goals To consolidate a Network of multicenter prospective neonatal studies To integrate clinical research in activities of assistence To determine the prevalence of VLBW in Portugal and the contribution in the mortality and morbidity To analyse the efficiency of neonatal regionalization To monitor clinical practices in order to have a national standard for the self-assessement

Portuguese VLBW Network Methods VLBW infants 500-1499gr (1994-98); 401-1499gr (>1998) Central Coordination – Coimbra Data Base on line: htpp//downloads.lusoneonatologia.net National Meetings (objectives and methods) Integration in clinical practice – Registration Form Collective and voluntary participation

VLBW infants - Portuguese Network Participating NICU´s A incidência em 1994 foi 0,66%. Dois anos depois passou para 0,81, atingindo o 1% em 1999. Os reflexos na mortalidade fetal foram notórios. A reanimação de fetos no limite da viabilidade aumentou verificando-se uma estagnação nos últimos anos.

VLBW National Network Cover rate 100% 14

The Portuguese VLBW Network VLBW Prevalence (%) Portuguese VLBW database 1994 - 2004 15

European Perinatal Health Report,2008 16

Portuguese VLBW Infants Network Regionalization 2005-2008 17 REGISTO NACIONAL DO GRANDE PREMATURO 1994-2009 Secção de Neonatologia - SPP

Place of delivery – 10 years evolution 1996 2005 In uterus transport 176 (21%) 374 (37%) P<0.001 Birth in level III 678 (82%) 920 (92%) Neonatal transport 124 (15%) 79 (8%) In born 706( 85%) 921 (92%) 18

Portuguese VLBW Network It worthes to avoid neonatal transport. 15% 9% Effectiveness of regionalization. 19

Europeristat 2008

The Portuguese VLBW Network It worthes to be born in the right place. VLBW 2000-2004 n=5034 VLBW 2004 n=1016 n Deaths % IN 4523 780 17.2 OUT 514 136 26.5 n Deaths % IN 923 133 14.4 OUT 93 25 26.9 P<0.001 P<0.001 21

Portuguese VLBW Network Evolution of mortality per BW Improving the efficiency in ELBW 22

Portuguese VLBW Infants Network Perinatal data 23 REGISTO NACIONAL DO GRANDE PREMATURO 1994-2009 Secção de Neonatologia - SPP

85 % 85 % 6.5 21% 8,5 8% 4.9% EuroNeoNet 2007

Threshold of Viability Birth Weight 2005-2008 Nº = 3561 2005-2008 n = 3561 25 REGISTO NACIONAL DO GRANDE PREMATURO 1994-2009 Secção de Neonatologia - SPP 25

Threshold of Viability (GA) 2005-2008 Nº = 3561 2005-2008 n = 3561 26 REGISTO NACIONAL DO GRANDE PREMATURO 1994-2009 Secção de Neonatologia - SPP 26

Portuguese VLBW Network 22 w GA: no survivors 23 w GA: rare 24 w: survival rate - 38 % Threshold of viability >50% alive 1996 – 27 w 1997 – 26 w >2004 – 25 w Threshold of survival without major sequelae 1996 – 29 w 1997 – 28 w >2004 – 27 w 27

Portuguese VLBW Network Morbidity 1996 2000 2006 2007 RDS 57 60 73 PDA 23 19 20 BPD (O2 36 w) 22 8.8 8.3 ROP 21 19.3 15 IVH (III,IV) 6.2 7.4 7.1 PVL 6.6 4.4 6 3.4 NEC (II,III) 5.3 4.3 6.3 3.6 Nos.Sepsis 32 31 26.5 29.6 28

53,8% 9% 65% 42% 19% 2.4 1.7 1.1 2.7 36% 92% 8,7% 4,2% 4,1% 20,8% 5,6 % 61,5% 24,7% 3,7% EuroNeoNet 2007

Portuguese VLBW Network Conclusions The aims of regionalisation were achieved. The perinatal care reform in Portugal is an example of how a good diagnosis and adequate proposals combined with a strong political will is important for changing .

Portuguese VLBW Infants Network The next years objectives To keep the benefits of organizational measures To improve Follow-up of VLBW infants at 36 m and 5 years To promote self-evaluation of NICU´s (Quality) To improve Network of Neonatal Research