ISOSS HIV report 2021

Question 1

Introduction

Accepted Answer

This report focuses on pregnancies in women living with human immunodeficiency virus (HIV) with an expected delivery date (EDD) in 2019, and includes all pregnancies reported to the Integrated Screening Outcomes Surveillance Service (ISOSS) by the end of December 2020. Data presented on vertical transmissions, breastfeeding and trends includes previous years. Data in this report includes the whole of the UK and predates current governance arrangements. For data reported from 2020 onwards, this will be England only.

Figure 1: reporting timeline for ISOSS data collection for women during pregnancy and infants after birth

Figure 1 shows the timeline of data collection by ISOSS during pregnancy and after the baby is born. There are 6 data collection points.

Green card reporting (from approximately 12 weeks gestation): initial pregnancy notification system to report to ISOSS for all pregnancies with HIV and syphilis screen positive results booked for antenatal care in the last quarter (previous 3 months). This submission happens at the end of a quarter.
Pregnancy notification form (from approximately 12 weeks gestation): initial details of pregnant woman, care and treatment in pregnancy are collected. This form is generated for each woman following the submission of the green card.
Pregnancy outcome form (birth): woman’s delivery details and initial care of the infant are reported. This form is available around the expected date of delivery but can be released earlier on request in cases of premature birth.
Paediatric notification form (1 to 6 months after birth): initial details and test results for infants seen for HIV (3 to 6 months) and syphilis (1 to 2 months) paediatric follow-up. These are generated using maternity reports where possible. †Diagnosed children are reported to ISOSS at any age when seen for paediatric care.
Paediatric syphilis follow up form (3 to 6 months after birth): generated for all infants born to women treated for syphilis in pregnancy and/or infants requiring treatment for syphilis until discharged. Congenital syphilis cases are reported to ISOSS as soon as they are identified, and this includes infants born to women not diagnosed in pregnancy.
Paediatric HIV follow up form: generated for all HIV-exposed infants needing 18 to 24-month confirmatory antibody test to establish infection status

HIV reporting

In 2019, 97.7% (762 out of 780) of green cards for HIV cases were submitted for all UK units reporting to ISOSS. Among pregnancies in women living with HIV reported in 2019, 99.3% of pregnancy notifications were submitted, and 97.8% of pregnancy outcomes were submitted.

The ISOSS team conduct extensive matching of case reports across pregnancies and paediatric reports. The case reports consist of complex clinical data and there are a number of data quality checks in place. Validations are in place for incoming reports and data are checked at each stage and queried directly with respondents where inconsistencies are identified, or data are missing.

Syphilis reporting

Data collection for screen positive syphilis pregnancies was due to begin on 1 April 2020 for women booked for antenatal care from 1 January 2020 onwards in England. However, due to the impact of the global coronavirus (COVID-19) pandemic, reporting was delayed until June 2020. To December 2020 (following 6 months of data collection), there were more than 600 syphilis screen positive reports, which is in line with anticipated numbers.

Question 2

HIV

Accepted Answer

ISOSS HIV surveillance has been running for more than 30 years, previously known as the National Surveillance of HIV in Pregnancy and Childhood (NSHPC), and holds data on more than 30,000 pregnancies to date. Maternity surveillance covers all pregnancies in women living with HIV who are diagnosed by delivery. Paediatric surveillance includes all infants born to diagnosed women living with HIV, along with any children diagnosed with HIV in the UK (less than 16 years of age) who are born in the UK or abroad, seen for paediatric care in the UK.

Overview

There were 818 pregnancies with an EDD in 2019 in the UK in women living with HIV, as reported to ISOSS. This is a decline from a peak of more than 1,400 pregnancies in 2010. Of these, 90% (735 out of 818) of women were known to be living with HIV before pregnancy, with the remainder diagnosed during pregnancy. This increased from approximately 60% in the early 2000s, to around 80% in calendar years 2010 and 2011 (Figure 2).

Figure 2: timing of maternal HIV diagnosis for pregnancies in women living with HIV in the UK (2000 to 2019)

Figure 2 is a bar chart showing the number of pregnancies in women living with HIV by timing of maternal HIV diagnosis. The number of women being diagnosed with HIV during the current pregnancy has decreased over time.

Maternal demographics

In 2019, 64.2% of pregnancies were in women of black African origin, decreasing from 73.2% in 2014. There was also an increase in the proportion of women of white ethnicity (from 17.7% in 2014 to 22.6% in 2019).

Most pregnancies (82.3%) were in women born outside of the UK (table 5), with an increasing proportion born to women from Eastern Europe (4.4% in 2014 compared to 8.6% in 2019). Of the women who were born outside the UK, 3.1% arrived in the UK during their pregnancy and a further 6.1% in the year prior to pregnancy (table 6).

The median age at delivery in 2019 was 34 years (interquartile range (IQR): 30 to 37 years) with a trend towards increasing maternal age. In 2019, 1 in 5 of the pregnancies reported were in women aged 40 or over (table 3), compared to 1 in 10 pregnancies in 2014. The increasing proportion of pregnancies in women over 40 years of age see Townsend C L and others, 2017 reflects trends in the general population, with implications for pregnancy management and outcomes, including increased risk of stillbirth, multiple births and chromosomal conditions. ISOSS continues to monitor data on maternal age and in addition will be collecting data on assisted conception from mid-2021. Overall, 41.1% of pregnancies were to women expecting their first child (see table 4).

Table 1: number of pregnancies to women living with HIV in the UK with an EDD in 2019 by region of booking

Region	Number of pregnancies	Percentage of pregnancies (%)
London	296	36.1
Midlands and East	204	24.9
North	141	17.2
South	113	13.8
England	754	92.0
Scotland, Wales, Northern Ireland	64	8.0

Table 2: number of pregnancies to women living with HIV in the UK with an EDD in 2019 by ethnic group

Ethnic group	Number of pregnancies	Percentage of pregnancies (%)
White	184	22.5
Black African	524	64.2
Black Caribbean	38	4.7
Asian	36	4.4
Other or mixed	34	4.2

For table 2, there were 2 pregnancies with missing information on ethnic group.

Table 3: number of pregnancies to women living with HIV in the UK with an EDD in 2019 by age group

Age group	Number of pregnancies	Percentage of pregnancies (%)
Below 25 years	44	5.4
25 to 29 years	126	15.4
30 to 34 years	219	26.8
35 to 39 years	268	32.7
40 years or older	161	19.7

Table 4: number of pregnancies to women living with HIV in the UK with an EDD in 2019 by parity

Parity	Number of pregnancies	Percentage of pregnancies (%)
0	174	41.1
1	96	22.7
2 or more	153	36.2

For table 4, there were 395 pregnancies with missing information on parity.

Table 5: number of pregnancies in women living with HIV in the UK with an EDD in 2019 by woman’s world region of birth

World region of birth	Number of pregnancies	Percentage of pregnancies (%)
UK	144	17.7
Eastern Europe	70	8.6
Rest of Europe	28	3.4
Africa	510	62.7
Asia	33	4.1
Other	28	3.4

For table 5, there were 5 pregnancies with missing information on country of birth.

Table 6: number of pregnancies to women living with HIV in the UK with an EDD in 2019 by timing of UK arrival

Timing of UK arrival	Number of pregnancies	Percentage of pregnancies (%)
More than 5 years before conception	358	72.1
1 to 5 years before conception	76	15.3
Less than or equal to 1 year before conception	41	6.1
During pregnancy	21	3.1

For table 6, there were 173 pregnancies with missing information on date of UK arrival.

Maternal diagnosis

Among pregnancies reported to ISOSS, 89.7% (734) of women are now already aware of their HIV status when they become pregnant.

The majority of pregnancies were in women who are thought to have acquired HIV heterosexually (94.7%). An increasing proportion of pregnancies were in women who themselves acquired HIV vertically, meaning vertical transmission (3.7% in 2019 compared to 1.1% in 2014). These women are more likely to have adverse clinical outcomes see Byrne L and others, 2017, including detectable viral load near delivery (reflecting their often complex clinical history), adherence, and drug resistance issues.

Two-fifths of women were diagnosed through antenatal screening, either in the current pregnancy or a previous pregnancy (table 8). An increasing proportion of pregnancies are in women diagnosed in sexual health services, with over 35% since 2015 in comparison to 25% in the early 2000s.

Table 7: route of transmission among pregnancies in women living with HIV in the UK with an EDD in 2019

Route of transmission	Number of pregnancies	Percentage of pregnancies (%)
Heterosexual	775	94.7
Vertical	30	3.7
Injecting drug use	5	0.6
Other	8	1.0

Table 8: setting of diagnosis among pregnancies in women living with HIV in the UK with an EDD in 2019

Setting of diagnosis	Number of pregnancies	Percentage of pregnancies (%)
Antenatal	278	40.6
Sexual health services clinic	256	37.4
GP	20	2.9
Other hospital department	40	5.9
Tested abroad	73	10.7
Other	17	2.5

For table 8, there were 135 pregnancies with missing information on setting of diagnosis.

Pregnancy management

Three quarters of pregnancies were in women who booked for antenatal care by 13 weeks gestation. Women who booked for antenatal care after 20 weeks gestation accounted for 7.0% of pregnancies (table 9).

Overall, 98.4% of pregnancies were in women taking antiretroviral therapy (ART) during pregnancy (table 10). In 81.3% of pregnancies, the women were on ART at conception, increasing from 65.7% in 2014 (figure 3).

Table 9: timing of antenatal booking among pregnancies in women living with HIV in the UK with an EDD in 2019

Timing of antenatal booking	Number of pregnancies	Percentage of pregnancies (%)
Less than 13 weeks	592	74.7
13 to 20 weeks	145	18.3
Greater than 20 weeks	56	7.0

For table 9, there were 25 pregnancies with missing information on booking date.

Table 10: timing of ART among pregnancies in women living with HIV in the UK with an EDD in 2019

Timing of ART	Number of pregnancies	Percentage of pregnancies (%)
Prior to pregnancy	656	81.3
First trimester	34	4.2
Second trimester	94	11.6
Third trimester	10	1.2
No treatment	13	1.6

For table 10, there were 11 pregnancies with missing information on timing of ART.

Those not on treatment either miscarried before treatment commenced or went abroad before treatment could have commenced.

Figure 3: timing of maternal HIV diagnosis and ART at conception, 1998 to 2019

The bar chart above shows the number of pregnancies in women living with HIV increasing between 2000 and 2010 before decreasing from 2011 to 2019. The number of women who are aware of their positive HIV status and are on ART at conception has been increasing since 2000.

The ‘other’ category contains pregnancies lacking information on precise timing of diagnosis and/or ART use.

Comorbidities

A co-infection of syphilis, hepatitis B or hepatitis C was reported in 6.1% of pregnancies. This data was presented at the British HIV Association (BHIVA) conference in 2020.

Pre-eclampsia was reported in 4.5% of pregnancies, increasing from 3.9% in 2014. Gestational diabetes was reported in 8.8% of pregnancies in 2019, increasing from 4.5% in 2014. Current rates of gestational diabetes in the general pregnant population are reported to be 3.5% by the Royal College of Obstetrics and Gynaecology (RCOG) (see Diagnosis and Treatment of Gestational Diabetes (Scientific Impact Paper No. 23)).

From mid-2021, ISOSS will be collecting the women’s weight at booking and in pregnancy which will support work looking at other known associated risk factors.

In 2019, 92.0% of pregnancies were in women who delivered with an undetectable viral load (≤ 50 copies per ml), reflecting the high coverage of ART during pregnancy. Of the 8 women delivering with a viral load of over 400 copies per ml, the range was 509 to 29,000. Please note, a viral load is not always available at delivery (within 30 days). This could be due to premature birth, turnaround time in laboratories or other reasons (table 12).

Table 11: co-infections among pregnancies in women living with HIV in the UK with an EDD in 2019

Co-infections in pregnancy	Number of pregnancies	Percentage of pregnancies (%)
Syphilis	7	0.9
Hepatitis B	37	4.5
Hepatitis C	6	0.7
None reported	768	93.9

Table 12: viral load at delivery for women living with HIV in the UK with an EDD in 2019

Viral load at delivery	Number of pregnancies	Percentage of pregnancies (%)
Less than or equal to 50 copies per ml	482	92.0
51 to 399 copies per ml	34	6.5
Greater than or equal to 400 copies per ml	8	1.6

For table 12, viral load is within 30 days of delivery (30 days prior to delivery or 7 days after). There were 145 births with missing information on viral load within 30 days of delivery.

Pregnancy outcomes

Among the 818 pregnancies in women delivering in 2019, 661 (80.8%) resulted in the livebirths of 675 babies, and 8 (1.0%) stillbirths (table 13).

Table 13: outcomes of pregnancies in women living in the UK with an EDD in 2019

Pregnancy outcome	Number of pregnancies	Percentage of pregnancies (%)
Livebirth	661	80.8
Stillbirth	8	1.0
Miscarriage	108	13.2
Termination	15	1.8
Left UK before delivery	8	1.0
Lost to follow up or unable to follow up	18	2.2

In table 13, the ‘lost to follow up or unable to follow up’ row includes 7 pregnancies reported by devolved nations where the outcome was reported after 2019. ISOSS is awaiting outcome reports for 6 pregnancies reported from England. There were 5 pregnancies that were lost to follow up or delivered elsewhere.

The proportion of women delivering vaginally has continued to increase with nearly half of women having a vaginal delivery in 2019, in line with BHIVA pregnancy guidelines, whilst emergency caesarean section rates have remained fairly stable (figure 3 and table 16).

Among deliveries in 2019, 14.9% were preterm (less than 37 weeks gestation) with 7.2% delivering under 34 weeks gestation. The proportion of infants born with a low birthweight (below 2.5kg) was 13.9%, and 3.8% were born with a very low birth weight (below 1.5kg). Current rates of preterm delivery in the general population are between 7% and 8% (see Office for National Statistics 2019 data on birth characteristics).

Figure 4: mode of delivery among women diagnosed with HIV, 2000 to 2019

Figure 4 shows that vaginal births have steadily increased since 2003. Elective caesarean sections decreased between 2001 and 2014 and have remained fairly stable since. Emergency caesarean sections have remained stable since 2000.

Among live and stillborn babies, 25 out of the 675 (3.7%, 95% confidence interval (CI): 2.4% to 5.5% ) had reported congenital conditions using the International Statistical Classification of Diseases and Related Health Problems 10th Revision. Among these, 6 had multiple conditions reported. The majority of these conditions were chromosomal, potentially reflecting increasing maternal age. Two livebirths (0.3%) resulted in a neonatal death within 28 days of birth.

In 2019, there were 669 deliveries of 675 infants.

Table 14: mode of delivery among live and stillbirth deliveries to women living with HIV in the UK with an EDD in 2019

Mode of delivery	Number of pregnancies	Percentage of pregnancies (%)
Vaginal	321	48.1
Elective caesarean	199	29.9
Emergency caesarean	147	22.0

For table 14, there were 2 pregnancies with missing information for mode of delivery.

Table 15: gestational age at delivery among live and stillbirth deliveries to women living with HIV in the UK with an EDD in 2019

Gestational age at delivery	Number of deliveries	Percentage of deliveries (%)
Greater than or equal to 37 weeks	568	84.9
34 to 36 weeks	53	7.9
Less than 34 weeks	48	7.2

Table 16: birthweight among live and stillbirth deliveries to women living with HIV in the UK with an EDD in 2019

Birthweight	Number of deliveries	Percentage of deliveries (%)
Greater than or equal to 2.5 kg	571	86.1
1.5 to 2.5 kg	67	10.1
Less than 1.5 kg	25	3.8

For table 16, there were 6 deliveries with missing information on birthweight.

ISOSS collects data on social complicating issues for all HIV vertical transmissions (see figure 5) and cases of congenital syphilis (see section on syphilis below). In 2020, ISOSS began collecting these data for all pregnancies reported to ISOSS to contextualise the vertical transmissions and to better support the work on inequalities carried out by Public Health England (PHE).

Question 3

HIV and breastfeeding

Accepted Answer

Planned mode of feeding

BHIVA recommends formula-feeding infants born to women living with HIV, eliminating the risk of postnatal transmission. Since 2012, the BHIVA guidelines on the management of HIV in pregnancy and postpartum also state that virologically-suppressed treated women with good adherence choosing to breastfeed may be clinically supported to do so. Guidelines include monthly testing for the mother and infant during the period of breastfeeding, and advice to breastfeed for as short a time as possible (for no longer than 6 months).

BHIVA guidance was updated during the COVID-19 pandemic in March 2020, stating that breastfeeding should be discouraged as it requires monthly maternal and infant viral load follow up for the duration of the breastfeeding period and for 2 months post-cessation of breastfeeding.

ISOSS has collected data on supported breastfeeding among women living with HIV who chose to breastfeed in line with BHIVA guidelines since 2012. This report presents the current snapshot of supported breastfeeding in the UK.

Since 2012, there have been 151 (1.8%) reports of supported breastfeeding among women on fully suppressive therapy among 9,133 live births by March 2020 (before the BHIVA COVID-19 interim update to breastfeeding guidelines). Most instances of supported breastfeeding (94.7%) were by women known to be living with HIV before pregnancy. In 86.0% of cases, the women were born abroad (majority from sub-Saharan Africa). The median age of these women at delivery was 35 years (IQR: 31 to 40 years).

ISOSS collects the reasons reported for the woman wanting to breastfeed (table 18). Bonding was the most common reason (65.0%), with concerns about disclosure of HIV status being the second most frequent reason (32.5%).

Table 17: timing of diagnosis for women living with HIV that breastfed their baby

Timing of diagnosis	Number of pregnancies	Percentage of pregnancies (%)
Before pregnancy	143	94.7
During pregnancy	8	5.3

Table 18: reasons for breastfeeding for women living with HIV

Reasons for breastfeeding	Number of pregnancies	Percentage of pregnancies (%)
Bonding	80	65.0
Health benefits	30	24.4
Family or friends expectations or pressure	34	27.6
Disclosure concerns	40	32.5
Previously breastfed since diagnosis	35	28.4
Previously breastfed before diagnosis	19	15.4
Concerns about finance	6	4.9

For table 18, some women had multiple reasons for breastfeeding. There were 28 pregnancies with missing information on reasons for breastfeeding.

Outcome: follow up status of infants

Breastfeeding was reported to have stopped in 120 out of 151 cases that ISOSS are monitoring. In most instances, breastfeeding stopped as part of a plan, however breastfeeding was stopped in 7 cases due to maternal viral load rebound. There was a wide range of duration of breastfeeding from 1 day to 2 years.

Table 19: follow up status of supported breastfed infants where breastfeeding had stopped

Outcome	Number of infants	Percentage (%)
Negative antibody test	90	75
Still in follow up	25	21
Lost to follow up	5	4

It is important to note that a number of the vertical transmissions occurring in the UK are attributed to undisclosed breastfeeding by women who may have been eligible for supported breastfeeding.

Ongoing monitoring of supported breastfeeding through ISOSS is essential, including early identification of any increased viral load problems and establishment of infection status post-breastfeeding cessation. Data are lacking on this in resource rich settings and the ISOSS UK data on this is the largest of its kind.

Question 4

Vertical transmissions

Accepted Answer

Vertical transmission is the passage of a disease-causing agent from mother to baby during the pregnancy, at birth, or in the postnatal period.

The vertical transmission rate is presented in 2-year intervals for babies born 2 years prior to the year the report is published. This accommodates the 18 to 24-month (from 2020, this is recommended by BHIVA as 22 to 24 months) confirmatory antibody test used to establish infant infection status.

Figure 5: vertical transmission rate by year of birth (in 2-year intervals) for infants born to women diagnosed with HIV in the UK

Figure 5 shows a decrease in vertical transmission rates from calendar years 2000 and 2001 to 2017 and 2018. The vertical transmission rate among diagnosed women living with HIV in the UK has remained under 0.3% since 2012. There were 3 transmissions among 1,340 infants with known infection status born in calendar years 2017 and 2018, with a vertical transmission rate of 0.22% (95% CI 0.05-0.65).

Among these cases, disengagement with health and social care services and booking for antenatal care ≥ 20 weeks gestation were factors contributing to vertical transmissions. The sustained low vertical transmission rates since 2012 reflects ongoing successes in the infectious disease in pregnancy screening (IDPS) programme and improved clinical management.

Challenges in monitoring the vertical transmission rate

Although BHIVA guidelines have recommended that all HIV-exposed infants have antibody testing for seroreversion at age 18 to 24 months, data from ISOSS found:

11.0% (145 out of 1,337) of infants born in calendar years 2017 and 2018 were lost to follow up before their 18 to 24-month antibody test
12.0% (158 out of 1,337) were discharged early based on a negative antibody between 3 and 17 months

ISOSS findings were fed back to BHIVA and are now reflected in their management of pregnancy and postpartum guidelines. ISOSS is uniquely placed to monitor outcomes and practice, including the impact of the COVID-19 pandemic on paediatric clinic scheduling and attendance. Further work is required to explore the possibility of inequalities or barriers to care among infants lost to follow up.

Clinical vigilance is required regarding the potential for postnatal transmission, especially in the era of supported breastfeeding in the UK. For the small number of women who are reported to be supported to breastfeed, in accordance with BHIVA guidelines, more frequent blood monitoring is required. In some cases, longer monitoring has an impact on surveillance, as the infant’s infectious status cannot necessarily be confirmed at 18 to 24 months. Where breastfeeding continues beyond the 18 to 24-month antibody test, an additional 2 months of testing is required in line with BHIVA guidelines.

HIV clinical expert review panels

All children diagnosed with HIV and seen for paediatric care in the UK are reported to ISOSS. This includes children who have acquired HIV vertically. These infants are born to women who are either:

known to be living with HIV during pregnancy (included in the ISOSS maternity surveillance)
diagnosed after their pregnancy (in addition to ISOSS maternity surveillance)

ISOSS conducts enhanced surveillance for all vertical transmissions of HIV occurring in the UK since 2006 (England only from 2020 onwards).

Methods

The ISOSS team interview clinicians involved in the care of the mother and baby during and after pregnancy. An average of 3 interviews are conducted per case across paediatrics, maternity and specialist care. Where multiple units are accessed for care, the process is repeated for each unit.

Detailed anonymised case reports are taken to the IDPS HIV Clinical Expert Review Panel (CERP). The panel consists of relevant clinical specialists including maternity, laboratory, paediatrics and sexual health services.

The purpose of the panel is to:

establish the circumstances surrounding the transmission
identify any contributing factors and learning points
feed recommendations into the IDPS HIV task group to inform national guidelines and policy

Figure 5 above shows all 143 vertical transmissions reported to ISOSS to date (108 cases reported by 2014 and 35 since 2014).

Figure 6: all reported vertical transmissions to ISOSS (2006 to 2019) by timing of maternal diagnosis and year of birth

The bar chart above shows a decrease in the number of vertical transmissions reported to ISOSS from calendar years 2006 to 2019. The bar chart also shows a decrease in the number of women diagnosed after pregnancy since 2006.

The recent clinical expert review panels (CERPs), conducted in 2019 and 2020, have covered 35 vertical transmissions reported to ISOSS between 2014 and the end of 2019, with data collection complete by June 2020.

The 35 infants were born to 33 women, with one set of twins and one set of siblings.

Over two-thirds of the 35 infants were born to women diagnosed after delivery, and a quarter to women diagnosed before or during the pregnancy (table 20).

The majority (82.9%) of infants were born to women who were born outside the UK. Of these, 89.6% were from sub-Saharan Africa and the remainder from Eastern Europe (table 22).

Median maternal age at delivery was 33 years (IQR: 28 years to 36 years). The highest number of vertical transmissions were seen in London (42.9%, table 21).

Table 20: timing of maternal diagnosis per baby with reported vertical transmission of HIV

Timing of maternal diagnosis	Number of cases	Percentage of cases (%)
Before pregnancy	7	20.0
During pregnancy	4	11.4
After pregnancy	24	68.6

Table 21: breakdown of babies with reported vertical transmission of HIV by region of child’s birth

Region of child’s birth	Number of cases	Percentage of cases
London	15	42.9
Midlands and East	7	20.0
North	6	17.1
South	3	8.5
England	31	88.6
Wales, Scotland, Northern Ireland	4	11.4

Table 22: breakdown of babies with reported vertical transmission of HIV by woman’s world region of birth

Woman’s world region of birth	Number of cases	Percentage of cases
UK	6	17.1
Eastern Europe	3	8.6
Africa	26	74.2
Other	0	-

Complicating issues

In over half of cases (19 out of 35), there were complicating issues reported at the time of pregnancy that are thought to have contributed to the vertical transmission. These numbers are likely to be under reported as they are based on information clinicians had available at the time of the pregnancy. Significant inequalities and barriers to care were identified. Table 23 shows a breakdown of complicating issues reported.

Table 23: breakdown of complicating issues reported in cases of vertical transmission

Complicating issues reported	Number of cases	Percentage of cases
Safeguarding	5	14.3
Mental health issues	9	25.7
Housing issues	7	20.0
Drug or alcohol misuse	3	8.6
Intimate partner violence	5	14.3
Uncertain immigration status	5	14.3
Financial issues	4	11.4
Language issues	7	20.0

For table 23, a woman may have had more than one complicating issue reported at the time of pregnancy.

‘Language issues’ relates to comprehension and/or fluency in English.

Infant outcomes

Infant age at diagnosis ranged from birth to 11 years. Median age at diagnosis was 2 years (IQR: 4 months to 5.6 years). Ten children (28.7%) had clinical indications at diagnosis, ranging from severe acquired immune deficiency syndrome (AIDS) defining symptoms, to ear, nose and throat (ENT) problems. Of these 10 children, 8 were born to women who were unaware of their HIV status by delivery.

In 10 cases (28.7%), there were delays in the child’s diagnosis ranging from a few weeks to over 2 years. Reasons for these delays (where the woman was not diagnosed by delivery) included:

children seen for clinical indicator reasons but not HIV tested
children not tested as it was noted that the woman screened negative in pregnancy
parent declined testing for the child

For 3 infants born to women known to be living with HIV prior to delivery, there were issues with laboratory testing relating to processing, incorrect labelling of the sample, and usual laboratory staff absence.

Contributing factors

CERPs have taken place to discuss these vertical transmission cases.

The main contributing factors to vertical transmission (one factor by case) were:

seroconversion during pregnancy or breastfeeding following confirmed negative antenatal HIV test: 17 cases
declined HIV screening in pregnancy: 5 cases
seroconversion or decline (reported negative HIV test in pregnancy but unable to confirm result): 2 cases
undisclosed breastfeeding among women diagnosed by delivery: 5 cases
booking at more than 20 weeks gestation or unbooked for antenatal care: 2 cases
no specific contributing factor: 4 cases

Additional contributing factors (multiple factors identified) were:

seroconversion during pregnancy or breastfeeding following confirmed negative antenatal HIV test: 1 case
undisclosed breastfeeding among women diagnosed by delivery: 1 case
lack of engagement or non-adherence to ART: 7 cases
booking at more than 20 weeks gestation or unbooked for antenatal care: 1 case
preterm delivery (less than 37 weeks gestation): 2 cases
no specific contributing factor: 1 case

There were 16 women diagnosed after pregnancy and 1 during pregnancy.

In nearly half of cases (17 of the 35), the woman had a negative HIV test in pregnancy and acquired HIV, seroconverting at some point during pregnancy or in the postnatal period whilst breastfeeding.

Among seroconversion cases:

5 women had partners who were known to be living with HIV by delivery and did not disclose (3 out of 5 were diagnosed more than 5 years before pregnancy)
11 women had partners who were diagnosed after the pregnancy
2 women had new partners in pregnancy
3 women had multiple partners in pregnancy
3 women had partners who had died either following diagnosis or with HIV indicated symptoms

Five infants were born to women where HIV screening in pregnancy was declined and were diagnosed postnatally. In all 5 cases, the woman accepted all other infectious disease screening. One woman declined HIV screening in 2 pregnancies and both siblings were found to be HIV positive.

All of these cases occurred before 2010 and the subsequent introduction of the IDPS pathway change, where a formal reoffer of screening by a member of the screening team to all women who initially declined was introduced. The introduction of this formal reoffer was as a result of this finding at earlier case reviews. Collection of declines data alongside key performance indicator (KPI) data was introduced in screening year 2016 to 2017. Since then, the rates of declines have reduced, and coverage remains high. There have been no vertical transmission cases where decline of screening was a contributing factor since this pathway update, however ISOSS will continue to monitor this.

Two women were unbooked for antenatal care, arriving in the UK during the pregnancy and delivering preterm. One woman was screened in labour with the result being available after delivery, so received no treatment before the baby was born. The second woman was diagnosed before pregnancy but was not on treatment and delivered shortly after arrival into the country.

In 5 cases, the transmission was postnatal and likely due to non-disclosed breastfeeding in women known to be living with HIV. Among these, 3 women had complicating factors reported, including mental health issues, housing issues, and social services support. Four women had issues with engagement with HIV health services and adherence to ART in pregnancy. In 1 case, the woman had not disclosed her HIV diagnosis to her family.

In 7 of the 11 vertical transmissions to women known to be living with HIV, engagement with HIV healthcare services and adherence to treatment in pregnancy was seen.

CERP recommendations

It is recognised that the recommendations in this report have been made by the members of the CERP and not directly by the national screening programme. Some of the recommendations fall outside of the screening pathway but remain within the scope of ISOSS. The terms of reference for the CERP includes the expectation to act on findings in this report and make recommendations to strengthen policy and practice at a national level to improve the prevention of vertical HIV infection. This includes the screening pathway and wider clinical care for women and their infants. Representation on this panel includes members from BHIVA and the Children’s HIV Association (CHIVA) who produce national clinical care guidelines.

Findings and recommendations are presented below and will be shared with colleagues in the PHE National Infection Service (NIS) sexually transmitted infections (STIs) team and BHIVA pregnancy guidelines group.

The ISOSS CERP met to discuss the 35 confirmed cases of vertical HIV transmission that occurred in infants born between 2014 and 2019. Findings and recommendations were made based on the discussion points of each case and have been grouped into 5 themes. These are:

sexual health in pregnancy
mental health in pregnancy
children born to women living with HIV and paediatric care
maternity care for women living with HIV
HIV care in relation to pregnancy

In total, 13 separate recommendations were made by the group for action by the IDPS programme. Findings that fall outside of the screening pathway are also discussed under the same themes.

Question 5

Syphilis

Accepted Answer

ISOSS commenced maternity syphilis data collection in mid-2020, collecting data for pregnancies booked from 1 January 2020. Paediatric surveillance of infants born to women treated for syphilis in pregnancy began in autumn 2020. A full dataset, including outcomes, is not yet available, and will be reported on in the next ISOSS report.

Congenital syphilis

In December 2019, ISOSS began enhanced data collection of all cases of congenital syphilis in babies born in England since 2015. Congenital syphilis is not a notifiable disease and there has been no population-level data available since 2015.

Initial findings

A comprehensive paper outlining congenital syphilis cases between 2015 and 2020 has been produced by PHE Screening and will support the ongoing work of the maternity strand of the PHE syphilis action plan.

Question 6

Hepatitis B

Accepted Answer

In 2013, the IDPS programme commissioned a national clinical audit from the Integrated Screening Outcomes Surveillance Service of the management of pregnant women with hepatitis B in England. The aim was to measure current practice against IDPS standards to highlight aspects of service provision that required improvement and to optimise current strategies for prevention of vertically acquired hepatitis B in England.

The audit included 2,538 pregnant women with hepatitis B who booked for antenatal care in England in 2014 with information on maternity care and, for high risk women, care in specialise services.

The audit was later extended to work in partnership with PHE immunisation division to link audit data with information on whether infants born to women in the audit went on to receive the full hepatitis B vaccination schedule at 4 and 8 weeks of age, and vaccination and serology test to ascertain infection status at one year of age.

All maternity providers in England were asked to submit data with only one trust declining to take part. A total of 2,542 pregnancies in 2,538 women who screened positive for hepatitis B were reported from 128 NHS trusts. There were 64 women who were reported to have opted out of inclusion in the audit across 19 trusts.

Table 24: number of pregnancies in women who screened positive for hepatitis B reported to the audit by region of child’s birth, England

Region of child’s birth	Number of pregnancies in women who screened positive for hepatitis B reported to the audit	Percentage of total pregnancies reported to the audit (%)
London	1,142	44.9
Midlands and East	602	23.7
North	457	18.0
South	341	13.4
England	2,542	100.0

Sociodemographic details

A third of women were born in Africa, a third in Asia and a third in Europe (5.8% in the UK). A basic level of English was reported for 18.2% of women, with a less than basic level of English reported for 20.6%. The median maternal age was 31 years, with 70.4% of pregnancies being in women with prior hepatitis B positive diagnosis. Booking for antenatal care occurred at a median of 11 weeks gestation, with 10.1% of women booking for care at or after 20 weeks gestation. In pregnancies with a new maternal hepatitis B diagnosis, women were younger, more likely to have a less than basic level of English, to have arrived in the UK less than 2 years before the audited pregnancy, and more likely to have booked for antenatal care at greater than 20 weeks gestation than the previously diagnosed group.

Screening and clinical pathways

Higher infectivity markers were reported in 11.7% of pregnancies. Trusts reported that in 151 pregnancies, a specialist appointment was not documented in the woman’s notes. Reasons for this included:

late booking
receiving specialist care at another trust or being transferred to another trust
referral not made or specialist appointment not offered
women declining or not responding to appointment invitations
lack of clarity around documentation

Defaults on specialist appointments were reported in 18.2% of pregnancies with an appointment scheduled, and were more commonly seen among women with a less than basic understanding of English and with 2 or more previous livebirths, as well as with younger women.

Antiviral treatment was received in 10.8% (180 out of 1,672) of pregnancies with treatment data available and in 74.0% (37 out of 50) with a hepatitis B virus DNA level of more than 10⁷ international units (IU) per mL reported at notification.

Childhood vaccination and serology at 12 months

Of the total 2,204 live births:

84.9% (1,872 out of 2,204) were given hepatitis B vaccination within 24 hours of delivery
1.4% (31 out of 2,204) were given hepatitis B vaccination more than 24 hours after delivery
11.0% (243 out of 2,204) were vaccinated but timing was unknown
2.5% (55 out of 2,204) had missing information on vaccine administration
a small number of babies with a neonatal death were not given the vaccine

Data on hepatitis B immunoglobulin (HBIG) administration to infants were available for 238 (91.5%) of the 260 pregnancies with higher infectivity markers at notification. Of these, immunoglobulin was administered to the baby in 87.0% (207 out of 238).

The hepatitis B audit, along with evidence from quality assurance reviews, screening standards and KPIs, immunisation data returns, and increased reports of incidents in both screening and immunisation programmes indicated that integration of the screening and immunisation services was essential to the development and delivery of an effective screening programme and infant immunisation service.

The hepatitis B antenatal screening and selective neonatal immunisation quality improvement project team undertook a comprehensive review of the screening pathway and the interface with the at-risk childhood vaccination programme.

The updated clinical pathway with increased surveillance of the virus was launched in April 2021, supported by comprehensive hepatitis B antenatal guidance covering the pathway from screening through to the 12 month serology.

Data collection through ISOSS will be able to evaluate the effectiveness of the screening and immunisation pathway on vertical transmission of the virus. ISOSS will begin collecting maternity data on hepatitis B screen positive pregnancies for women booked for antenatal care from 1 April 2021 onwards.

Question 7

Congenital rubella

Accepted Answer

Rubella has been a notifiable disease since 1988 and is monitored by PHE’s rubella surveillance programme team which is part of the NIS based at PHE Colindale. ISOSS maintains national surveillance of congenital rubella cases in the UK. This remains important following the cessation of screening for rubella susceptibility in pregnant women in England in April 2016.

Data collection methods

Since 2018, the IDPS programme commission the British Paediatric Surveillance Unit (BPSU) to provide case notifications on congenital rubella in the UK to ISOSS. The team liaise with the IDPS programme and PHE’s rubella surveillance team on any notifications. If any cases are reported, the ISOSS team would conduct enhanced data collection based on the existing ISOSS vertical transmissions (see figure 5) methodology to review with the IDPS and rubella surveillance team. It would look to identify any contributory factors and inform and evidence any potential policy or programme reviews.

Number of reported cases

From 2018 to the end of 2020, there were 2 reports of congenital rubella.

One case was an infant born in the UK where the mother acquired rubella infection abroad. The second possible case was a teenager who was born and diagnosed abroad, but it remains unclear whether this is a confirmed case of congenital rubella.

Since cessation of antenatal rubella susceptibility screening in 2016, there have been no cases of congenital rubella reported where the mother acquired rubella in the UK. ISOSS will continue to monitor and update in future reports.

Question 8

Summary and next steps

Accepted Answer

The sustained low vertical transmission rate among women living with HIV in the UK reflects the ongoing success of pregnancy screening and clinical management. In 2019, 9 in 10 pregnancies were in women who already knew their HIV status before conception, and over 90% delivered with an undetectable viral load.

We continue to see a small number of HIV vertical transmissions occurring in the UK. Investigations of these by ISOSS has already demonstrated that two-thirds of infants were born to undiagnosed women, and over half of women experienced adverse social circumstances in pregnancy. ISOSS CERPs provide valuable insights into the circumstances of the few transmissions still occurring in the UK.

Challenges to clinical management include increasing complexities of infant follow up in the breastfeeding era and during the global pandemic. Further work is ongoing to investigate inequalities and barriers to care for women and infants. ISOSS is uniquely placed to continue monitoring clinical practice and pregnancy outcomes nationally, including the impact of COVID-19.

ISOSS’ comprehensive population-level surveillance provides a national overview of infections in pregnancy. This supports partner organisations, such as PHE initiatives to address inequalities, and pregnancy guidelines. The surveillance also provides an opportunity to identify and examine trends, changing needs and issues across and within infections.

ISOSS continues to work closely with our valued maternity and paediatric respondents across England, supporting the reporting process as much as possible. Over the next 12 months, initial findings from the maternity and paediatric syphilis surveillance will be reviewed and will feed into the next ISOSS report. Maternity data collection for hepatitis B will commence in 2021.

Question 9

Recommendations from the HIV vertical transmission CERP

Accepted Answer

Sexual health in pregnancy

There appeared to be a lack of sexual health awareness and its importance during pregnancy among women, their partners and health care staff. Where women were suspected to have an STI in pregnancy, including herpes, a full STI screen was not completed, and women were not being referred to sexual health services in line with British Association for Sexual Health and HIV (BASHH) guidance. A reliance on screening results from earlier in pregnancy was also seen and appeared to influence clinical diagnosis and care decisions.

A lack of understanding or oversight by health care staff of the risk factors that would indicate that the woman would benefit from retesting later in pregnancy was apparent. This included women who had disclosed a change in partner and who had multiple sexual partners during their pregnancy.

Disclosure by men that they are known to be living with HIV was a common finding, particularly where women were diagnosed later in pregnancy or postnatally. A lack of disclosure by women that their partner is known to be living with HIV was seen, resulting in a lack of support and follow up in pregnancy. Referral to multidisciplinary team (MDT), potential pre-exposure prophylaxis (PReP) treatment and retesting later in pregnancy were therefore not readily available to women.

Recommendation 1

Information should be available for women and their partners around protecting themselves from infections in pregnancy, and sexual health advice. This should include how to access sexual health services.

Recommendation 2

Promote the ‘negative now’ message to all women following a negative screening test result.

Recommendation 3

Strengthen and promote guidelines for health care staff to increase targeted retesting following the identification of women who may have been exposed to risk, including those who:

change their sexual partner
inject drugs
are a sex worker
have an infected partner
have a partner who is sexually active with another person
are diagnosed with a STI

Recommendation 4

Referral should be made to sexual health services for testing for women presenting with suspected or confirmed STIs in pregnancy, in line with BASHH guidelines.

Recommendation 5

Refer all women who disclose that their sexual partner has current STIs or is HIV positive to sexual health services.

Mental health in pregnancy

There appeared to be a lack of integration and communication between mental health services, HIV services and those providing maternity care services to women. This included a lack of involvement at MDT meetings. Opportunities to involve wider health and social care staff, including health visitors and social workers, were not utilised for women with known mental health problems.

Recommendation 6

Strengthen the importance of having a clinically representative MDT for screen positive women in its guidance. This may include promoting involvement of the wider health and social care team, as appropriate to the individual needs of the woman.

Children born to women living with HIV and delivery of paediatric care

Children were presenting to health care services with recurrent infections and indicative health problems for HIV but were not tested. Again, a reliance of a woman’s screening result from early pregnancy was seen when assessing unwell children.

A lack of adherence to both BHIVA and CHIVA guidance was seen in relation to the testing and follow up of HIV exposed children, including children being discharged from services before the advised 18 to 24-month serology testing.

Where women were diagnosed with HIV postnatally, there was a delay seen in testing of their children. Previous initiatives to improve this awareness have included CHIVA’s Don’t forget the children campaign. Other initiatives include additional text on laboratory reports for adults with a new HIV diagnosis stating “if any children, please refer for testing”.

Recommendation 7

Strengthen the importance of MDT working and communication to ensure that care plans for women and their babies are available in the woman’s notes and are accessible by paediatricians in advance of the baby being born.

Recommendation 8

Support ISOSS in raising awareness of the importance of reporting via communications, including newsletters and presence at appropriate conferences.

Maternity care for women living with HIV

For women who were known to be living with HIV who had previous children, there was evidence that the levels of support offered varied. This included for women who had previously had children who were confirmed HIV negative at 18 to 24 months of age.

A lack of awareness around the availability of peer support for women in the UK was evident, with ‘low prevalence’ being reported as a barrier.

Trusts restricting access to HIV test results was seen to impact on the ability of the health care team to provide appropriate levels of care to women and their infants.

Evidence of misunderstanding by both women and health care staff around the undetectable equals untransmissible (U=U) messaging in pregnancy and during breastfeeding not being applicable was seen. This is despite clear messaging from BHIVA.

Women were seen to be accessing care not at their local maternity provider, but rather opting to travel further for their care. Women were also seen to be transferring maternity care between units during their pregnancy.

Evidence of Cabergoline failure was seen in multiple cases where transmission was attributed to undisclosed breastfeeding.

Recommendation 9

Provide links to peer support organisations for screening teams for screen positive women.

Recommendation 10

Strengthen the laboratory handbook around the need for a process to be in place for laboratories to request repeat samples for blood in the wrong tube and samples that cannot be processed, and the follow up of result of outstanding samples.

Recommendation 11

State in the programme handbook the importance of understanding confidentiality rules for pregnant women living with HIV. Health care providers should be aware of the woman’s right to confidentiality but must not let misinterpretation of confidentiality law negatively impact on communication with other health care professionals and services.

HIV care in relation to pregnancy

There were many cases where men disengaged with HIV services and had not disclosed their known HIV status to their pregnant partners. It is unclear if the risks for partners were understood in relation to current or future pregnancies.

Cases where women may have benefitted from access to PReP, for where a partner is known to be HIV positive but not on treatment (even if the partner’s viral load is less than 50 copies per mL) were also seen. Again, a general lack of adherence to both BHIVA and CHIVA guidance was seen.

Recommendation 12

Strengthen wording in the programme handbook that when a woman is admitted to a maternity service and has no evidence of a screening result in this pregnancy, this should prompt the offer of screening and notification to the screening team.

Recommendation 13

ISOSS team to promote the clinical support networks and contact databases available for clinicians to utilise via the newsletter.

Question 10

Background

Accepted Answer

The UK National Screening Committee (UK NSC) recommends systematic population screening in pregnancy for HIV, hepatitis B and syphilis. This is to enable early detection and treatment for infections in pregnancy to significantly reduce vertical (mother to child) transmission of infection.

The NHS IDPS programme has responsibility for implementing this policy. A formal IDPS programme was established in 2008 and became part of the population screening programmes within PHE in 2013.

The broad potential health outcomes of the IDPS programme are

safeguarding the health of women identified with these conditions in pregnancy
preventing new infant infections
protecting the health of newly infected infants

The programme also monitors congenital rubella cases following the cessation of antenatal screening for rubella in 2016.

Collation and analyses of screening outcome data is essential to:

monitor the performance of the screening programme
review all women with a screen positive result to inform screening programme pathways and screening standards
identify areas of further audit and research

In 2019 to 2020, about 663,000 women were eligible for the IDPS programme antenatally, and 642,892 registerable births were recorded in England in the calendar year 2019 (see Office for National Statistics data on Births in England and Wales (2019)).

Screening outcomes

In 2018, the IDPS programme developed the ISOSS to collect, analyse and report on a set of outcomes of the IDPS programme in order to assess its impact on:

prevention of vertically acquired HIV, hepatitis B and syphilis
protecting the health of women with HIV, hepatitis B and syphilis during and after pregnancy
protecting the health of infants newly infected with HIV, hepatitis B, congenital syphilis and congenital rubella syndrome

The IDPS programme currently commission the ISOSS team based at Great Ormond Street Institute of Child Health to collect screening outcomes data.

The service is built on the methodologies and legacy of the NSHPC. It has well established strong links with obstetrics and paediatric units since 1986 and is world leading in childhood and infectious diseases surveillance and research.

ISOSS is building on existing projects and audits that include:

The IDPS programme also supports the continued monitoring of congenital rubella cases through the BPSU rare conditions active reporting scheme. Rubella infection is a notifiable disease and the ISOSS team work in collaboration with the rubella surveillance team in PHE.

Governance

PHE has permission from Parliament to collect this data without the need to seek consent from individual patients. Patient data is collected under legal permissions granted to PHE under regulation 3 of the Health Service (Control of Patient Information) Regulations 2002. The service also conforms to the requirements of the Data Protection Act (2018).

Data protection is an important priority for ISOSS, and the service does not share patient-identifiable information unless specific approvals or data sharing agreements are in place. Where data is shared, minimal identifiers are included.

All requests for ISOSS data for potential research purposes are reviewed by the antenatal and newborn (ANNB) screening research advisory committee (RAC).

Collaborations

ISOSS contributes to other national and international public health surveillance services to add to wider global intelligence on infectious diseases. These services include the:

HIV CERP members

The HIV CERP members are:

Alasdair Bamford: Consultant and Speciality Lead in Paediatric Infectious Diseases, GOSH
Lisa Bullows: Specialist Screening Midwife, Birmingham Women’s Hospital
Laura Byrne: Consultant in HIV Medicine, St George’s Hospitals NHS Foundation Trust
Sarah Dermont: IDPS Project Coordinator, NHS IDPS programme
Maria Dowie: Clinical Nurse Specialist, Leeds Teaching Hospitals NHS Trust
Temi Fayoyin: ANNB Screening and Immunisation Coordinator, Croydon
Kate Francis: ISOSS Coordinator, University College London (UCL), Great Ormond Street Institute of Child Health
Yvonne Gilleece: Honorary Clinical Reader and Consultant in HIV and Sexual Health, Brighton and Sussex University Hospitals NHS Trust; Chair of BHIVA HIV in Pregnancy Guidelines
Abha Govind: Consultant Obstetrician and Gynaecologist, North Middlesex University Hospital NHS Trust
Julia Langley: Antenatal and Newborn Screening Specialist Midwife, Portsmouth Hospitals NHS Trust
Hermione Lyall: Consultant in Paediatric Infectious Disease, Imperial College Healthcare NHS Trust
Kim McLeod: Consultant Obstetrician, Manchester University Hospitals NHS Foundation Trust
Paddy McMaster: Consultant in Paediatric Infectious Diseases, North Manchester General Hospital
Jenny Neal: Programme Manager, NHS IDPS programme
Mayuri Panchal: Specialist Midwife, The Royal Free London
Helen Peters: ISOSS Manager, UCL, Great Ormond Street Institute of Child Health
Lucianna Rubinstein: Consultant in GUM, London North West University Healthcare Trust (Northwick Park, Ealing, Hillingdon)
Laura Smeaton: IDPS Project Coordinator, NHS IDPS programme
Professor Claire Thorne: Professor of Infectious Disease Epidemiology, Population, Policy and Practice Department, UCL, Great Ormond Street Institute of Child Health
Pat Tookey: Honorary Senior Lecturer, UCL, Great Ormond Street Institute of Child Health
Sharon Webb: Programme Manager, NHS IDPS programme
Chris Wood: Consultant HIV physician; Clinic Lead for HIV Services, North Middlesex University Hospital NHS Trust

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