Improvement in the antenatal detection rate of CHD and its effect on survival in Wales: How can we improve our results further?

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1 Improvement in the antenatal detection rate of CHD and its effect on survival in Wales: How can we improve our results further? Dr Orhan Uzun Consultant Paediatric Cardiologist UHW

2 Welcome

3 Improvement! Guided by an equation that applies to racing and to the road: Efficiency = Performance. Ferrari: Emphasis with F14T is on aerodynamic performance McLaren: MP4-29 lacks front-end downforce

4 How do we grade improvement? >95% Excellent performance >87% Good performance < 75% Poor performance

5 Where were we in 2001? Antenatal detection percentage for CHD was not published by CARIS due to very poor results and poor outcomes Common event to have very sick infants popping out in the middle of the night at a DGH on particularly Easter or Christmas nights No standardised policy for detecting CHD inutero Four chamber view was recommended

6 What did we used to drive?

7 Took my axe out for a long battle! And great and important plans are diluted to the point where we don t do anything Or to take arms against a sea of troubles Hamlet Act 3, scene 1, 55-87

8 Our Delight, Our Purpose to Work!

9 Performance Drivers Source Fundamental Supplemental Realities External Organisational Information: Expectations Guidelines and standards Feedback Resources: Material Equipment Space and time Work design Incentives and Accountabilities: Non financial rewards Financial rewards Recognition Accountability Internal Personal Skills and knowledge: Experience Training Practice Motivation: Enthusiasm Desire Willingness to do the work Capability and strength: Mental Physical and Emotional ability to do the work Discipline and Work Ethics

10 Performance standards Monitor Performance Standards and guidelines Select indicators Set goals and targets Communicate expectations Performance Management Refine indications Define measures Develop data systems Collect data Analyse and Report Performance Analyse data- audit cycles Feedback data to managers, staff, policy makers Develop regular quality check and feedback system Develop training programs to maintain skills and knowledge Quality Assurance and Further Improvement Use data to change policies to improve results Manage changes Create a medium-network for lifelong learning

11 There are no "knowns." There are things we know that we know. There are known unknowns. That is to say there are things that we now know we don't know. But there are also unknown unknowns. There are things we do not know we don't know. Donald Rumsfeld Translation: When we do the best we can and we pull all this information together, and we then say well that's basically what we see as the situation, that is really only the known knowns and the known unknowns. And each year, we discover a few more of those unknown unknowns.

12 What is the extent of the problem? Cardiac / 1000 Neurological / 1000 Chromosomal / 1000 Down s / 1000 Other 1 / 1000 Gastrointestinal / 1000 Abdominal Wall / 1000 Limbs / 1000 Urinary / 1000 Caris Data , Eurocat Data

13 What are the tools? Standards and guidelines? Five standard views: 1. Situs and position of the heart 2. Four chamber 3. Left outflow tract 4. Right outflow tract 5. Three vessel and trachea view

14 Three vessel trachea Short axis Long axis Four chamber Situs Examination of the fetal heart by five shortaxis views: a proposed screening method for comprehensive cardiac evaluation Ultrasound Obstet Gynecol 2001; 17:

15

16

17 Sensitivity of Four Chamber View versus Outflow Tract View Detection rates for four chamber 69% of all univentricular heart 66% of all hypoplastic left hearts 38% of all atrioventricular septal defects Detection rate only 48% with the fourchamber view alone 78% with an extended cardiac examination Carvalho JS, Mavrides E, Shinebourne EA, Campbell S, Thilaganathan B. Improving the effectiveness of routine prenatal screening for major congenital heart defects. Heart 2002; 88:

18 Factors Influencing the Prenatal Detection of Structural Congenital Heart Diseases Is the detection rate is higher: if the scan is performed in a tertiary institution? if there are other chromosomal/structural anomalies? Maternal BMI does not affect the detection rate Three independent variables affect detection rate 1. complexity of the cardiac lesion 2. experience of the operator 3. the detection of chromosomal anomalies Ultrasound in Obstetric and Gynecology. Volume 21, Number 1, January 2003, pp (7)

19 Detection Rate Major CHD Am J Obstet Gynecol 1999;181: ) The performance of routine ultrasonographic screening of pregnancies in the Eurofetus Study Hélène Grandjean,

20 Detection Rate Minor CHD Am J Obstet Gynecol 1999;181: ) The performance of routine ultrasonographic screening of pregnancies in the Eurofetus Study Hélène Grandjean,

21 What to Tackle First? Engage policy makers! Engage Obstetricians, Sonographers, Midwives Assess baseline knowledge skill and competency level of the workforce Create a media for lifelong learning: teach, train, monitor, audit Referral criteria restricted versus unrestricted access Start a network and value contribution of everyone

22 Can we fix it? To be, or not to be, that is the question Hamlet Act 3, scene 1, 55-87

23 Where were we before 2001?

24 Haverfordwest Carmarthen Royal Glamorgan Llanelli

25 Reached Masses with National CPD Meetings

26

27 Sonographers practical skills Informal lectures Parents and Patients Education Renown Faculty National Meetings Renown Faculty One to one Telemedicine Distant Teaching Welsh Paediatric Cardiac Network

28

29 NICOR Major-Serious CHD Detection Rate for Wales 80.0% 73.5% 70.0% 60.0% 50.0% 40.0% 37.8% 34.5% 58.3% 40.5% 52.2% 53.3% 65.4% 30.0% 20.0% 10.0% 11.1% 15.0% 18.2% 0.0%

30 Referral Centre and True Positivity Rates % % 80% 70% 60% 50% 40% 30% 20% 10% 20% 30% 3.50% 15% 10% 12.50% 9% 20% 14% 9.50% %

31 Referral Centre and True Positivity Rates % 90% 80% 70% 71% 65% 60% 50% 40% 30% 30% 54% 54% 53% 46% 43% 33% 29% 31% % 10% 20% 3.50% 15% 10% 12.50% 9% 20% 14% 9.50% 0%

32 Referral Centre and True Positivity Rate 100% 90% 80% 70% 60% 83% 83% 81% 80% 76% 75% 71% 68% 65% 60% 50% 40% 30% 20% % 0%

33 Where are we now 2013?

34 Major CHD Requiring Operation within 1 year: Detection rate According to LHB Wales % 100% 100% 100% 100% 100% 100% 80% 86% 83% 67% 60% 50% 55% 50% 40% 33% 40% 33% 20% 20% 25% 0% 0% 0% 0% 0% 0% 6A1 6A2 6A3 6A4 6A5 6A6 6A7 6A8 6A9 6B1 6B2 6B3 6B4 6B5 6B6 6B7 6B8 6B9 6C1 6C2 6C3 6C4

35 Enjoy the Outcomes Nationally, Wales moved to the top of league table with best outcomes in the UK in 2012 Changing A Nation s Health Map From Inequality to Equity of Access

36 Change in Detection Rate with Training Four Chamber vs Outflow Anomalies Before training After training Four chamber p< Outflow tract

37 80% 2012

38 Make a Difference Improved Patient Outcomes: Reduction of Mortality

39 How we grade improvement? >95% Excellent performance >87% Good performance < 75% Poor performance

40 What are we good at? Excellent Good

41 What do we need to concentrate on? Excellent Good Acceptable Poor performance Atrioventricular defect Fallot's tetralogy Coarctation of aorta Aortic valve stenosis Total anomalous PVC

42 Proportion of Normal and Abnormal Scans by Referral Reason Poor Image 11 3 Fetal Arrhythmia Associated Congenital Anomalies Referral Reason Maternal Medical Condition Increased Nuchal Thickness IDDM FHx of CHD Maternal CHD 94 5 Previous Child with CHD Abnormal antenatal Scan Normal Abnormal 0% 20% 40% 60% 80% 100% Proportion A Graph showing the proportion of normal and abnormal scans for each referral reason. Source: Referral Reason Related Analysis

43 What is the yield rate according to referral reason? Reason for referral Total no referred Abnormal (%) Suspected cardiac anomaly (52.6%) Current fetus has genetic conditions 23 7 (30.4%) Current fetus has associated congenital anomalies (29%) Suspected arrhythmias (19.5%) Mother has Congenital Heart Disease 87 7 (8%) Mother on medications or having medical conditions Previous pregnancy had major congenital heart disease 43 3 (6.9%) (6.5) Mother has IDDM 54 2 (3.7%) F/H of Congenital Heart Disease (3.7%)

44 Network Approach Welsh Fetal Cardiovascular Network is established on 7 th June 2014 Workforce registry: Local Cardiac Leads Network approach needs to be strengthened Meet twice a year: January and June Website: online tutorials, updates, case reviews Workshops: Rotational Certification: Optional vs Mandatory

45 Welcome

46 What support is needed from other Hospitals? Directorate support for service development Local cardiac lead-resource persons Obstetrician Radiologist Radiographer Neonatologist-Paediatrician

47 What will we do? Performance data should be available online for public to view for each trust Accountability Support should be available to maintain standards improve performance Education, education, education Training, training, training

48 What should be a standard exam? Static or Progressive Standards? Cardiac axis, situs, three vessel Four chamber and outflow tracts Not enough More detail examination should not be left to cardiologist Cardiac biometry must be adopted! Aortic arch, sagittal view must be obtained! Colour Doppler must be used! Pulse wave Doppler must be used!

49 Develop Guidelines Sustained or intermittent SVT FHR>180 Consider delivery if gestation is greater than 38 weeks Digoxin 250mcg tid + Flecainide 100mg tid Digoxin 250mcg tid + Flecainide 100mg tid Reduce dose when FHR < 160 bpm or side-effects develop Digoxin mcg bd/od + Flecainide 100mg tid/bid Continue until delivery

50 Doppler 144bpm A A A A V V 73bpm Hear rate less than 100bpm Could be due to PAC 2:1 block Complete heart block Terminal heart failure Conducted PAC V V Blocked non-conducted PAC A A A A A

51 Mitral-Aortic Doppler M-Mode Doppler Tissue Doppler V V V V A A A A A A

52 Aortic stenosis severe Severe mitral valve regurgitation with dilation of the left atrium

53 Severe Tricuspid Regurgitation

54 Total Anomalous Pulmonary Venous Connection Supracardiac TAPVC: Increased SVC Flow

55 Tip 1. See the obvious! Grand Tips Tip 2: Look for the hidden clues!

56 RA LA RV AO ST DA SVC RV LV LV Orhan LA Orhan Orhan Orhan Situs Four chamber Left ventricular outflow SVC Orhan RA RV AO LA RPA PA LPA DA PA Thymus Orhan AO SVC Trachea PA AO DA Orhan DAO Orhan LA IVC RA Right ventricular outflow Three vessel and trachea Ductal and aortic arches Bicaval

57 Fetal cardiac views for measurement of cardiac dimensions Orhan RA RV >30 LA LV RA RV LA LV LV Orhan RV AO LA RA RV AO LA RPA PA LPA Orhan Orhan Diastole Four Chamber Systole Long Axis Short Axis SVC PA AO AO PA Thymus AO Orhan LA RA DA DA Trachea SVC Orhan DAO Orhan Orhan IVC Ductal Arch Aortic Arch Three Vessel Trachea Bicaval View

58 Importance of Measurement Dilated right ventricle

59 Importance of Measurement Mimics hypoplastic left ventricle

60 RV/LV Ratio>1.6 (LV/RV<0.6) RA >30 LA RA LA RV LV RV LV Orhan Orhan Diastole 1.a Four Chamber Systole

61 What are the fetal US findings? Sagittal view is diagnostic

62 Grand Tips Ask a Second Opinion

63 Remedies for Failures and Misses Do not dent anyone s confidence Do not blame anyone for misses Analyse available data in a non judgemental manner Invite failing individual to Cardiff for one to one teaching Organise evening teaching seminars for sonographers complemented with buffet and beverages

64 Encouraging Life Long Continuous Learning Organising yearly National Fetal Conference Invite experts from all over the country to give talks to our workforce Gently nudge and sometime threaten ASW and managers at DGHs for their failures to be revealed unless they support and send their workforce to these meetings Provide educational videos to DGHs

65 Requirements for Success! Data sharing, good communication PACS image viewing online consultations and immediate feedback In house training and education Higher degree education, MSc in fetal echocardiography Local audits to be published online and should be made public like NICOR data

66 Technology That is what we wish to drive now!

67 Can we do it?

68 Conclusions Yes we can!

69 Thank You

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