Obstetric reporting in association with the
Royal College of Obstetricians and
Gynaecologists
Quarterly update
January 2015 • Newsletter 101
HAPPY NEW YEAR
to all respondents.
And a big thank you for the invaluable contribution
you make in providing data to the NSHPC. More than
19,000 pregnancies have been reported since the
NSHPC was established in 1989; between 1300 and
1600 have been reported annually since 2005.
Three presentations at November’s international HIV
Glasgow Conference used NSHPC data; abstracts
are at http://hivglasgow.org/abstracts
Huntington et al (UK CHIC & NSHPC). Does pregnancy
increase the risk of ART-induced hepatotoxicity among HIVpositive women? (Oral)
Tookey et al. Outcomes related to 4864 pregnancies with
exposure to LPV/r. (Poster)
Byrne et al. Pregnancy outcomes in women growing up with
perinatally acquired HIV in the UK and Ireland. (Poster)
The graphic below is taken from Laura Byrne’s poster.
Currently at least 6% of women with perinatally
acquired HIV, accessing care in the UK and Ireland,
have had one or more pregnancies. This is a
preliminary descriptive report of an emerging
population. Linking paediatric, pregnancy and second
generation data through the NSHPC offers a golden
opportunity to monitor pregnancy outcomes in this
unique group of women living with HIV.
Year of birth and year of conception for women with perinatally acquired HIV
Surveys of unit practice
Survey 1. Women who decline HIV testing in
pregnancy
Our first clinician survey on women who declined HIV
testing in pregnancy has gone out and responses
should be completed by Friday 16th January. We are
looking for a wide range of clinical experience – so
please fill it out when you receive the request, if there
is still time.
Why are we doing it?
As you probably know, we are auditing recent cases
of HIV infection perinatally acquired in the UK. As
previously observed, some of these infants were born
to women who declined HIV testing in pregnancy.
The survey was developed in collaboration with the
Children's HIV Association, to map current local
policy when pregnant women decline HIV screening
and your recent experience of the management of
these women and babies; the findings will help to
inform CHIVA policy. Although we are not auditing
nshpc@ucl.ac.uk
020 7905 2815
the National Screening Committee’s screening
standards, the findings will also be useful to the NSC.
Survey 2. Recording migrant status
This survey is currently in development, and we plan
to send it out in February. Please respond!
Why are we doing it?
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.
The surveys are designed to be quick and easy to
complete. No individual patient data will be collected,
and individual unit responses will not be published for
either survey. If you have questions, please email us.
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 • January 2015
Children born to HIV positive women
Table 1 includes data from the paediatric reporting scheme, run in parallel with the obstetric scheme.
Paediatric data are collected via the RCPCH’s British Paediatric Surveillance Unit, through its orange card
system, and directly from some larger paediatric units.
Table 1. 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 December 2014)
Year of birth
UK
infected indeterminate uninfected
Ireland
infected indeterminate uninfected
Total
(UK & Ireland)
pre 1990
14
18
104
6
0
40
182
1990-99
2000-01
87
13
117
87
691
704
4
4
6
2
63
125
968
935
2002-03
16
101
1352
5
9
252
1735
2004-05
23
99
1990
1
10
205
2328
2006-07
18
105
2355
0
5
222
2705
2008-09
13
123
2395
2
4
237
2774
2010-11
8
307
2176
2
3
192
2688
2012-13
5
1126
1043
0
14
169
2357
2014
2
469
185
0
18
0
674
Total
199
2552
12995
24
71
1505
17346
780 infected children born in the UK or Ireland to women undiagnosed at the time of delivery have also been reported.
Outstanding cards and forms
SOUNDEX
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 400 mauve, and almost 200 yellow
outcome forms, so please complete and return those
too.
Soundex was completed on 43% of recent mauve
forms (but only 16% of paediatric forms). If you
haven’t been completing it, could we urge you to
try! This anonymised identifier, along with date of
birth, helps us flag up duplicate reports and link
subsequent pregnancies. Some units provide
calculators which translate a family name to its
soundex representation. We have a calculator on our
website so you can look up the code for any
surname; information entered is not retained or stored
in the calculator. See
http://www.ucl.ac.uk/nshpc/soundex
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 nshpc@ucl.ac.uk
National Screening Committee
The latest newsletter from the NSC’s
Infectious Diseases in Pregnancy
Screening Programme is available at
http://www.screening.nhs.uk/screeningmatters
NSHPC website
Our updated slide set, and full study details including
forms etc. are at www.ucl.ac.uk/nshpc
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)
Kate Francis (administrative assistant) NSC
Helen Peters (data manager/statistician) PHE
Angela Jackson (research assistant) NSC
Laura Byrne (Clinical Research Training Fellow) MRC
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