Network audit and quality improvement Dr Elspeth Brown Network clinical lead

Network audits Approx 10 years ago: audit of new patients in clinic and outcomes 2016: retrospective audit of previous 5 years patients transitioned and lost to follow up 2017: audit of antenatal diagnosis rates

Fetal audit Antenatal diagnosis rate 2017 Dr R Newbegin ST7 Paediatrics Dr E Brown Consultant

CCAD - NICOR 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?Opendocument

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

No antenatal diagnosis Aortic arch hypoplasia + coarctation 9 5 One of above + VSD or ASD 6 Coarctation + double aortic arch 1 Double aortic arch 2 Valvar lesions (AS, MR, TR) VSD 24 VSD + other (RVOTO or valve abnormality) 3 Tetralogy of Fallot 19 12 DORV + other AVSD 4 10 AVSD + arch hypoplasia/coarctation TGA TGA + other (biventricular repair) Truncus ccTGA + other HLHS Complex single ventricle 8 PA Absent pulmonary valve syndrome TAPVD PAPVD ALCAPA AN diagnosis details VSD + other TR R aortic arch AVSD + other Arch hypoplasia/coarctation x 2 TGA + other Interruption (biV repair) Pulmonary atresia (BiV repair) DORV (biventricular repair) DORV + other Coarctation/hypoplasia x 2 (? Could go under VSD section) PA (biventricular repair) Single ventricle DORV + MA, PA TGA + DILV TGA + DILV, arch hypoplasia TGA + Tricuspid atresia AVSD + PA, TAPVD, R isomerism DILV + DOLV TA, PA, TAPVD, R isomerism TA ccTGA + other DORV VSD

Antenatal and postnatal diagnoses

Antenatal and postnatal diagnoses

Post natal diagnosis by area

East Yorkshire – post natal diagnosis VSD VSD, ASD, CoA Supracardiac TAPVD Lesions which are easily missed antenatally

Manchester – post-natal diagnosis Tetralogy of Fallot

Lincoln – post-natal diagnosis 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 *

Futures What should we be looking at?

Thank You