Obstetric reporting in association with the
Royal College of Obstetricians and
Gynaecologists
Quarterly update
October 2014 • Newsletter 100
Almost 19,000 pregnancies have been reported
to the NSHPC since it was established in 1989.
Since 2005 between 1300 and 1600
pregnancies have been reported each year.
Table 1. Pregnancy outcome for 18,924
reports confirmed by September 2014
n
%
Live birth
15794
83
Stillbirth
168
1
Spontaneous abortion
1127
6
Termination
834
4
Expected to continue to term
419
2
Went abroad before delivery
237
1
Lost to follow-up
295
2
Other outcome*
50
<1
* Ectopic pregnancy & maternal death in pregnancy
SOUNDEX on the mauve form
We are keen to encourage better reporting of
soundex on the mauve forms. Many respondents
do provide this code: it was completed on 40% of
recent forms. If you haven’t been completing it,
could we urge you to try!
Soundex is 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.
See http://www.ucl.ac.uk/nshpc/reporting/soundex
Surveys of unit practice
We are currently piloting two surveys of local unit policy and practice. Many thanks to those of you who
are helping with the pilots. These electronic surveys will be sent to you in the next 3 months. We are
updating contact details, including email addresses, for all respondents, so please do respond to our
requests about this. The surveys will not seek any individual patient information and are about local
policy and practice. We will finish the first survey before sending the second. They will be simple to
complete on-line and should not take more than a few minutes of what we know is very precious time!
1. Women who decline HIV testing in pregnancy
As you are probably aware, we are auditing all recently reported cases of HIV infection perinatally
acquired in the UK. As observed in our previous audit, some of these infants were born to women who
declined HIV testing in pregnancy. This survey has been developed in collaboration with the Children's
HIV Association (CHIVA), and is designed to map current local policy on women who decline HIV
testing in pregnancy and your recent experience of the management of these women and babies. We
are not auditing the National Screening Committee (NSC) antenatal HIV screening standards, and
individual unit responses will not be published. The summary findings of this survey will help to inform
CHIVA policy, and will also be useful to the NSC.
2. Recording migrant status
The majority of pregnant women living with HIV in the UK and Ireland were born abroad, and many are
settled and have UK or EU citizenship or leave to remain; anecdotally however, health care staff and
support organisations report that some have problems accessing HIV care because of their migrant
status. We want to explore whether and how migrant status is recorded in maternity services, and how it
affects women’s ability to access appropriate treatment and support.
No individual patient data will be collected in either survey. If you have any questions, please email us.
nshpc@ucl.ac.uk
020 7905 2815
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 • October 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, and directly from
some of the larger paediatric units.
Table 2. Year of birth and infection status for children born in the UK & Ireland to women
diagnosed by the time of delivery (reports to the end of September 2014)
Year of birth
UK
infected indeterminate uninfected
Ireland
Total
infected indeterminate uninfected (UK & Ireland)
pre 1990
14
18
104
6
0
40
182
1990-99
87
117
691
4
6
63
968
2000-01
13
87
704
4
2
125
935
2002-03
16
101
1352
5
9
252
1735
2004-05
23
99
1990
1
10
205
2328
2006-07
18
104
2355
0
5
222
2704
2008-09
13
123
2395
2
4
237
2774
2010-11
8
305
2170
2
6
189
2680
2012-13
6
1120
1011
0
16
166
2319
2014
1
311
102
0
10
0
424
Total
199
2385
12874
24
68
1499
17049
779 infected children born in the UK or Ireland to women undiagnosed at the time of delivery have also been reported.
Outstanding cards and forms
NSHPC website
Please get in touch if you have any suggestions or
questions about the study, and please return
outstanding green cards as soon as possible.
For our updated slide set, and full details
about
the
NSHPC
protocol,
forms,
publications and steering group, please go to
www.ucl.ac.uk/nshpc
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.
The latest newsletter from the
NSC’s Infectious Diseases
in Pregnancy Screening
Programme is available at
www.ucl.ac.uk/nshpc/reporting/soundex
www.infectiousdiseases.screening.nhs.uk
ETHICS approval MREC/04/2/009
NSHPC team & 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 (Clinical Research Training Fellow) MRC
Angela Jackson (researcher) NSC
Kate Francis (administrative assistant) NSC
nshpc@ucl.ac.uk
020 7905 2815
NSHPC Population, Policy and Practice Programme
www.ucl.ac.uk/nshpc
UCL Institute of Child Health
page 2
30 Guilford Street London WC1N 1EH