Fetal cardiology service evaluation Antenatal diagnosis rate 2017 Dr R Newbegin ST7 Paediatrics Dr J Murphy ST7 Paediatrics Dr E Brown Consultant

NICOR – National Institute for Cardiovascular Outcomes Research Antenatal Diagnosis Evidence suggests that antenatal diagnosis of major congenital heart disease improves outcomes, particularly from the point of view of serious morbidity such as brain damage. For the purposes of comparative audit of antenatal diagnosis we have chosen to analyse data only for babies who require surgery or therapeutic catheterisation during the first year of life, excluding those with patent ductus, patent foramen ovale or atrial septal defect, as these conditions are not diagnosed antenatally. The NICOR Congenital dataset contains only one simple piece of information concerning antenatal diagnosis – whether the heart abnormality was detected antenatally or not. We present data on the percentage of patients being treated by surgery or intervention in the first year of their life, in each cardiac centre, in cases with this data field properly completed. The value shown is the percentage of eligible cases that were successfully diagnosed antenatally. Please note this is not the same as the overall antenatal detection rate as it does not take into account deaths during pregnancy or peri-natal deaths or where the condition is less severe and does not require treatment in the first 12 months or where a decision is made not to intervene due to the complexity of the heart abnormality or associated comorbidities. Results are averaged over a 5 year period and also shown for the most recent full year available.

NICOR – Antenatal detection rates 2013-2016 https://nicor4.nicor.org.uk/chd/an_paeds.nsf/vwContent/Antenatal%20Diagnosis?Op endocument

Leeds data 2017

Antenatal diagnosis rate 2017 Total number of children < 1 year who had surgery or intervention in 2017 (excluding PDA) 173 Data analysed for 172 1 exclusion (one born in Kuwait) Antenatally diagnosed 91 Not antenatally diagnosed 81 Antenatal diagnosis rate 52.9%

Demographics ETHNICITY Postnatal Antenatal Caucasian 63 64 Black 2 13 16 Other 8 Unknown 1 Demographics GENDER Postnatal Antenatal Female 32 37 Male 49 54

Red – Postnatal diagnosis Blue – Antenatal diagnosis Harrogate baby born in Kuwait (ignore) Red – Postnatal diagnosis Blue – Antenatal diagnosis

Antenatal and postnatal diagnoses

Antenatal and postnatal diagnoses

Antenatal and postnatal diagnoses

Antenatal and postnatal diagnoses 2 missed TGA Both presented as cyanosed neonate. Neither had a fetal scan. One from Barnsley, one from Leeds

Antenatal and postnatal diagnoses

Missed diagnosis by area

Manchester – missed diagnosis Tetralogy of Fallot

East Yorkshire – missed diagnoses VSD VSD, ASD, CoA Supracardiac TAPVD Lesions which are easily missed antenatally

Lincoln – missed diagnoses MR, TR, PPHN (had mitral valve replacement) Tetralogy of Fallot * Double aortic arch, vascular ring* Aortic arch hypoplasia, coarctation, multiple VSDs* Coarctation, bicuspid aortic valve *

Lincoln – missed diagnoses MR, TR, PPHN (had mitral valve replacement) Tetralogy of Fallot * Double aortic arch, vascular ring* Aortic arch hypoplasia, coarctation, multiple VSDs* Coarctation, bicuspid aortic valve * *3 vessel view

Summary Antenatal detection rate amongst the highest in the UK ✅ Good at detecting TGA and single ventricles (4 AVSD and 2 TGA were missed) ❌ Majority of ‘missed’ cases were either VSD or TOF Most common anomalies Easy to miss on scan

Limitations NICOR allows for national data comparisons. However… Data does not account for those who die prior to any intervention Data does not account for those who have a termination following an antenatal diagnosis

Another thought… Have there been any cases who were not antenatally diagnosed, but did have a fetal echo? None found in our audit group

Subsequent action taken…. Further training provided ✅ Boston Grantham Lincoln Continually reviewing any postnatal diagnoses where a fetal echo had been performed In progress Audit of outcomes for those diagnosed antenatally including termination rates Re-audit using 2018 data Watch this space…….! Use our data to look at training in areas where antenatal diagnoses are being missed Target geographical areas Target teaching to detect specific lesions