APPENDIX 30
Memorandum by echo: the fetal heart charity
(MS 37)
TITLE
Effective improvement in the national detection
of congenital heart disease at the 20-week scan.
SUMMARY
Every week, in the UK, about 100 babies are
born with congenital heart disease (CHD).
Despite almost universal routine ultrasound screening
at 20-weeks gestation, on average only 23% of these newborns are
detected before delivery. 1 Additionally, there is wide ranging
postcode inequality in detection ranges from 3% to 68%, in the
bottom and top ten centres.
Missed diagnoses result in neonatal morbidity
and mortality and increased costs associated with unplanned, emergency
service utilisation. 3,4 In the future there may be an additional
burden of litigation if screening is proved to be inadequate.
On-site training for sonographers, complemented
by telemedicine, provide a means to improve detection to a sustainable
level of 70-80%.2
ABOUT OUR
ORGANISATION
echo: the fetal heart charity comprises four
Trustees, one Chief Sonographer Trainer, one Fetal Cardiologist,
one Fetal Cardiology Fellow, plus Secretary. In addition there
is a panel of professional medical advisors, ranging from obstetricians
to fetal medicine specialists.
It is a national charity, formed in 1999, that
aims to increase the detection and subsequent care and treatment
of babies with CHD before birth. It provides education and training
in fetal heart scanning for ultrasound sonographers, to improve
detection of CHD at the routine 20-week scan and this project
is supported by a grant from the British Heart Foundation (BHF).
The charity also provides antenatal information for parents who
wish to understand heart problems affecting their unborn baby.
REFERENCES:
(1) Bull, C. 1999 Lancet 354:9186, 1242-7, Current
and potential impact of fetal diagnosis on prevalence and spectrum
of serious congenital heart disease at term in the UK.
(2) Sharland, G. K. & Allan, L. D. 1992,
"Screening for congenital heart disease prenatally. Results
of a 2.5-year study in the South East Thames Region", British
Journal of Obstetrics and Gynaecology, vol 99, pp 220-225.
(3) Hunter, S., Heads, A., Wyllie, J., &
Robson, S. 2000, "Prenatal diagnosis of congenital heart
disease in the northern region of England: benefits of a training
programme for obstetric ultrasonographers.", Heart, vol.
84, no 3, pp 294-298.
(4) Richmond et al, Semin Neonatol 2001;
6, pp 27-35
EVIDENCE
1. Congenital heart disease (CHD) is a serious
problem affecting thousands of births every year. It is largely
undetected and un-audited, especially in rural areas, and leads
to considerable neonatal morbidity and mortality, as well as
parental distress.( 3,4) Costly emergency medical resources are
also required for emergency transfer and treatment of unexpectedly
sick newborns.
2. CHD affects one in 125 babies and accounts
for c. 1/3 of all congenital defects.
Half of these cases are severe, requiring urgent
surgery.
CHD accounts for 50% of all deaths from malformations.
CHD accounts for 10% of all deaths in the first year
of life.
3. Every week, in the UK, about 100 babies
are born with congenital heart disease (CHD).
Despite most mothers being offered routine ultrasound
examination at 20-weeks gestation, on average only 23% of these
newborns are detected before delivery.
4. In addition, there is wide ranging postcode
inequality in detection ranging from 3% to 68%, in the bottom
and top 10 centres.
5. If CHD is detected before delivery (eg
at the routine 20-week ultrasound scan), there are more options
for the care and treatment of mother and baby and there is the
possibility of simple but effective fetal interventions (eg opening
of closed fetal heart valves in the womb).
6. It is reasonable to expect parents to
question the effectiveness of screening when it misses 77% of
detectable cases of CHD. Trusts need to ensure they do not leave
themselves open to litigation by failing to provide adequate equipment
or training.
7. Past studies in London and Newcastle
in the 90's show that detection of CHD can be raised to 70-80%
if health care professionals are given adequate training.
8. The problems are two-fold. Easy access
to training is limited to hospitals around major paediatric cardiology
centres and there is no formal accreditation process or funded
training programme to enable continued professional development
in effective screening for fetal heart defects.
9. The solution is relatively simple. On-site
training for sonographers, complemented by telemedicine clinics
provides a means to improve detection to a sustainable level of
70-80% at any hospital with adequate equipment (conforming to
RCOG guidelines).
10. The charity promotes a practical, proven
screening protocol (based on RCOG and international guidelines)
and currently offers on-site training at 12 pilot hospitals across
the UK. Audit figures will be available in 12-24 months, but preliminary
feedback indicates that the training is proving to be highly effective—in
one centre with 5,118 births in a 15 month period, there were
23-27 cases of CHD detected (85% detection rate).
11. Sonographers are aware that they could
improve detection rates and in most cases just need a little encouragement.
Many sonographers have already attended cardiac study days and
on-site training gives them the confidence to achieve the diagnostic
views.
RECOMMENDATIONS
Funding for (2-3) more Trainers to reach a critical
mass of maternity hospitals and clinics, across England.
The establishment of a recognised accreditation for
fetal heart scanning within the routine 20-week scan, using a
suitable protocol.
Recognition by Trusts of the need to replace old
or obsolete ultrasound equipment and to allow staff to be retrained
to the appropriate standard and to be supported whilst they gain
practical experience.
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