Obstetric reporting in association with the
Royal College of Obstetricians and
Gynaecologists
Quarterly update
July 2014 • Newsletter 99
British HIV Association (BHIVA)
Over 18,600 pregnancies have been reported to
the NSHPC since it was established in 1989 (Table
1). Since 2006 there have been between 1400 and
1600 pregnancies reported each year in the UK
and Ireland.
national audit of pregnancy
management in women living with HIV
We are collaborating with BHIVA on their current
audit of the 2012 clinical guidelines for management
of HIV infection in pregnant women. To avoid
burdening respondents with dual data collection,
BHIVA requested access to anonymised NSHPC
data from UK maternity units for this audit, which
covers pregnancies due for delivery in 2013. All
patient-identifying details will be removed before we
supply the data to BHIVA, but hospital of delivery
will be included. We plan to transfer the data in
October 2014, by which time outcome of these
pregnancies should have been submitted to us. A
fuller letter explaining this has been included in the
obstetric mailing with the Green Cards for Q100.
Table 1. Pregnancy outcome for 18,668
reports confirmed by June 2014
n
%
Live birth
15562
83
Stillbirth
163
1
Spontaneous abortion
1104
6
Termination
828
4
Expected to continue to term
430
2
Went abroad before delivery
236
1
Lost to follow-up
297
2
Other outcome*
48
<1
* Ectopic pregnancy & maternal death in pregnancy
***************************************
Perinatal HIV Audit – thank you to all respondents
Many thanks to everyone who has taken part in our audit of recent perinatal HIV infections. All perinatally
infected infants born in the UK since the beginning of 2006 onwards were eligible to be included. We have had
a great response so far with over 200 telephone interviews conducted with paediatric, obstetric and HIV
specialist respondents involved in 110 cases, with just a few more to complete. The data collection phase is
coming to an end for births reported to us by April 2014. However we will be continuing to collect data on newly
diagnosed cases of perinatal HIV in UK-born children as they are reported to us through our routine systems.
We have collected some valuable data which we will now get on and analyse. Completed cases are being
discussed by our Expert Review Panel, with clinicians from relevant specialities and lay representatives. Once
all cases have been discussed the review panel will prepare recommendations for the National Screening
Committee (NSC) which funded the audit.
If you have been approached to provide information about an infected infant born in the UK since 2006, but not
yet participated, please contact us immediately if you would like to take part.
Year of birth
Infants born to
2006/7
2008/9
diagnosed mothers
18
13
8
4
undiagnosed mothers
39
18
7
3
Total
57
31
15
7
nshpc@ucl.ac.uk
2010/1
020 7905 2815
2012/3
The table shows the number of UKborn perinatally infected infants
diagnosed by April 2014, by year of
birth. It is likely that more infants
born to undiagnosed women will be
diagnosed and reported at a later
stage, particularly those born in
recent years. There may also be
some reporting delay for perinatally
infected infants born to diagnosed
women in 2012/13.
www.ucl.ac.uk/nshpc
page 1
NSHPC, Population, Policy and Practice Programme, UCL Institute of Child Health, 30 Guilford Street, London, WC1N 1EH
NSHPC Quarterly Update • July 2014
Children born to HIV positive women
Table 2 includes data from the paediatric reporting scheme, which runs in parallel to the obstetric scheme.
Paediatric data are collected via the British Paediatric Surveillance Unit (BPSU) of the Royal College of
Paediatrics and Child Health (RCPCH), through its orange card system.
Table 2. Children born in the UK and Ireland to women diagnosed by the time of delivery
Year of birth and infection status (reports to the end of June 2014)
Year of birth
pre 1990
1990-99
2000-01
2002-03
2004-05
2006-07
2008-09
2010-11
2012-13
2014
Total
UK
infected indeterminate uninfected
14
18
104
87
117
691
13
87
704
16
101
1351
23
99
1990
18
105
2356
13
124
2395
8
325
2144
4
1119
968
0
191
30
196
2286
12733
Ireland
Total
infected indeterminate uninfected (UK & Ireland)
6
0
40
182
4
6
63
968
4
2
125
935
5
9
252
1734
1
10
205
2328
0
5
222
2706
2
4
237
2775
2
7
188
2674
0
26
155
2272
0
7
0
228
24
76
1487
16802
778 infected children born in the UK or Ireland to women undiagnosed at the time of delivery have also been reported.
Conference presentations using
NSHPC data
Outstanding cards and forms
CHIVA Conference, Manchester, May 2014
Laura Byrne presented a progress report on our
Audit of perinatal HIV in the UK at the CHIVA
conference, where she was awarded the prize for the
best oral presentation. The slides are available at
http://www.chiva.org.uk/professionals/health/events/c
onference/may14/programme.html
Perinatal Medicine, Harrogate, June 2014
Kate Harding, from our Steering Group, presented
data on Ruptured membranes and risk of vertical
transmission in women with HIV at the Perinatal
Medicine Conference. We’re currently writing these
data up for publication.
For our updated slide set, and full details about
the NSHPC protocol, forms, publications and
steering group, go to www.ucl.ac.uk/nshpc
ETHICS approval MREC/04/2/009
Please get in touch if you have any suggestions or
questions about the study, and please return outstanding
green cards as soon as possible. We are waiting for over
500 mauve, and approaching 200 yellow outcome forms,
so please complete and return those too. Contact us if you
are behind with the reports, or are having problems
providing the information, and we’ll try to find a way to help.
Please provide SOUNDEX on mauve form
40% of recent forms have soundex completed. No soundex
is unique to a single name, and a name cannot be
recreated from a soundex code, but it’s a very useful
anonymised identifier which, together with date of birth,
helps us to flag up duplicate reports, and link subsequent
pregnancies together. Some units provide calculators to
translate a family name to its soundex representation. We
also have a soundex calculator on our website so you can
look up the code for any surname. The information entered
is not retained or stored in anyway. To use the soundex
calculator and for more information, go to
www.ucl.ac.uk/nshpc/reporting/soundex
NSHPC team and funding
Current NSHPC funding, gratefully acknowledged, is
primarily from Public Health England and the
National Screening Committee
Pat Tookey (principal investigator)
Claire Thorne (co-investigator)
Icina Shakes (administrative assistant) PHE
Mario Cortina-Borja (co-investigator/statistician)
Helen Peters (researcher/statistician) PHE
Laura Byrne MRC Clinical Research Fellowship
Angela Jackson (researcher) NSC
Kate Francis (administrative assistant) NSC
nshpc@ucl.ac.uk
020 7905 2815
www.ucl.ac.uk/nshpc
page 2
NSHPC, Population, Policy and Practice Programme, UCL Institute of Child Health, 30 Guilford Street, London, WC1N 1EH