Guidance

ISOSS syphilis report 2022

Updated 16 November 2022

Applies to England

Introduction

The Integrated Screening Outcomes Surveillance Service (ISOSS) carries out the surveillance of pregnancies to women with human immunodeficiency virus (HIV), hepatitis B and syphilis, their babies and other children diagnosed with HIV, vertically acquired hepatitis B and congenital syphilis in England as part of the NHS Infectious Diseases in Pregnancy Screening (IDPS) programme.

This report focuses on pregnancies to women who screened positive for syphilis and booked for antenatal care in England from 1 January 2020 to 31 December 2020. All screen positive pregnancies reported to ISOSS with data submitted by the end of December 2021 are included. Paediatric outcome reporting includes infants born to women requiring treatment in pregnancy (not all infants born to women who screen positive). Data presented on congenital syphilis includes cumulative data from 2015, building on the previous ISOSS 2015 to 2020 congenital syphilis case review report.

This report uses the calendar year, in line with the reporting of sexual health data. It is acknowledged that screening programmes publish data by financial year.

IDPS programme standards summary statistics

Screening standards data is submitted by providers with the most recent data relating to screening year 2020 to 2021 (1 April 2020 to 31 March 2021). This data is collected separately from ISOSS surveillance of women with a screen positive result and their infants.

In screening year 2020 to 2021 in England:

• about 650,000 pregnant women entered the antenatal screening pathway
• coverage for antenatal HIV, hepatitis B and syphilis screening was 99.8%
• 1.59 eligible pregnant women per 1,000 tested received a screen positive result for syphilis

Table 1: trends in screen positive rates for syphilis in pregnant women, England, screening year 2017 to 2018 to screening year 2020 to 2021

	2017 to 2018	2018 to 2019	2019 to 2020	2020 to 2021
Returns included/expected	124/147	144/146	139/143	139/142
Women with screen positive results: rate per 1,000 women tested	1.39	1.52	1.50	1.59
Screen positive, requiring treatment: rate per 1,000 women tested	0.53	0.69	0.63	0.72

Table 1 note 1: known false positive results are not included in the number of women with screen positive results.

Table 1 note 2: the rate for total screen positive result women (row 2) for 2019 to 2020 and 2020 to 2021 is based on a count that has been rounded to the nearest multiple of 5 to prevent disclosure by comparison with other published data.

Syphilis reporting

The process and points in time for data collection can be seen in the ‘Background’ section below. Data is reported to ISOSS by 154 different maternity providers, some of which are part of bigger NHS trusts that report their screening standards data in a combined format that is published in IDPS programme screening standards reports.

In 2020, 100% of maternity providers in England submitted their initial notifications for women with screen positive results for syphilis via the quarterly reporting system on the ISOSS portal (616 of 616 green cards completed). Antenatal notification forms were subsequently returned for 99.7% of screen positive pregnancies, and pregnancy outcomes forms were submitted for 99.7% of pregnancies to women requiring treatment for syphilis in pregnancy.

Syphilis overview

There were 906 women who screened positive for syphilis in pregnancy, with a booking date in 2020 reported to ISOSS by 31 December 2021. ISOSS stopped collecting data on false positive screening results due to the burden of reporting this was causing for providers.

Syphilis confirmed screen positive results

Overall, 390 of 906 (43.0%) women booked in 2020 with a positive result for syphilis required treatment in pregnancy. Newly diagnosed women requiring treatment accounted for 33.0% of screen positive results and 9.8% of women were previously diagnosed requiring treatment. Three women who were found to be positive for syphilis in pregnancy had previously screened negative earlier in their pregnancy. All 3 of these women were retested as clinically indicated by sexual health services.

Table 2: screen positive breakdown

	Number of pregnancies	Percentage (%)
Newly diagnosed requiring treatment	299	33.0
Previously diagnosed requiring treatment	89	9.8
Previously diagnosed not requiring treatment	507	56.0
Requires treatment (unclear diagnosis history)	2	0.2
Not known (not seen by GUM)	9	1.0

Table 2 note: ‘Not known’ includes women lost to follow-up and those who had a miscarriage or termination before being seen by sexual health services, therefore no feedback has been provided to the maternity provider.

Overall, 6.4% of the women reported had 1 co-infection and 0.7% reported having 2 or more co-infections. In total, 2.3% of women had hepatitis B virus (HBV) co-infection and 1.3% were co-infected with HIV. One woman screened positive for all 3 of the infections covered in the IDPS programme.

Table 3: coinfections in pregnancy

Infection	Number of pregnancies (total = 906)	Percentage (%)
HIV	12	1.3
Hepatitis B	21	2.3
Hepatitis C	4	0.4

Other coinfections reported included chlamydia, herpes simplex virus, sepsis, trichomoniasis, group B streptococcus, gonorrhoea, scabies and cytomegalovirus.

Pregnancy management

Antenatal booking

Only 44.3% of pregnancies to women were reported as being booked for antenatal care by 10 weeks gestation, compared to 65.0% in the general population. Women who booked for antenatal care after 20 weeks gestation accounted for 9.5% of pregnancies (see table 4), compared to 5.9% in the general population. There were 29 women who screened positive for syphilis who booked for antenatal care over 30 weeks gestation, with all 29 requiring treatment.

Five women (0.6%) had received no antenatal care in England, arriving unbooked in labour. Of the 390 women requiring treatment for syphilis, 24 transferred care to a different maternity provider during their pregnancy.

Table 4: gestation at booking

Gestation	All pregnancies (n = 906)	Percentage (%)	Pregnancies requiring treatment (n = 391)	Percentage (%)	General population (%) (NHS Digital maternity statistics 2020 to 2021)
Less than 10+0 weeks	401	44.3	92	23.6	65.0
10+0 to 12+6 weeks	259	28.6	120	30.8	20.2
13+0 to 19+6	160	17.7	116	29.7	8.0
Equal to or more than 20 weeks	86	9.5	62	15.9	5.9

London had the highest number of pregnancies in women with a screen positive result for syphilis, with the lowest number of pregnancies being in the South West. A full breakdown of syphilis screen positive results by region is shown in table 5.

Table 5: number of pregnancies by region of booking

Region	All pregnancies (n = 906)	Percentage (%)	Women requiring treatment (n = 390)	Percentage (%)
London	229	25.3	96	24.6
Midlands	195	21.5	83	21.3
East of England	72	7.9	33	8.5
North East and Yorkshire	128	14.1	51	13.1
North West	145	16.0	75	19.2
South East	100	11.0	34	8.7
South West	37	4.1	18	4.6

Demographics

Maternal age

For all women who screened positive for syphilis, the median age at expected date of delivery was 31.5 years (range: 14.1 to 50.0 years, interquartile range (IQR): 9.8 years). A fifth of pregnancies were to women under 25 years, and nearly 1 in 10 to women over 40. The median age was slightly lower for women who required treatment during pregnancy (29.6 years, range: 15.1 to 47.8 years, IQR: 9.3 years) and a higher proportion of these women were under 25 years of age, as shown in table 6.

Table 6: maternal age at delivery

Age group	All women (n = 906)	Percentage (%)	Women requiring treatment (n = 390)	Percentage (%)
Less than 25 years	178	19.6	99	25.4
25 to 30 years	210	23.2	108	27.7
30 to 34 years	240	26.5	102	26.2
35 to 39 years	195	21.5	53	13.6
40+ years	83	9.2	28	7.2

Ethnic origin

In 2020, two thirds of pregnancies were in women of white ethnicity (see table 7). Just over a third of women were born in the UK and around a third born in Eastern Europe (see table 8). Of the women born outside the UK, 8.0% arrived during pregnancy and a further 3.3% arrived in the year before conception. A higher percentage of women who required treatment arrived during pregnancy (13.9%) and a further 7.3% arrived in the year before conception (see table 9).

Table 7: ethnic origin

Ethnicity	All women (n = 901)	Percentage (%)	Women requiring treatment (n = 389)	Percentage (%)
Asian	75	8.3	34	8.7
Black African	118	13.1	32	8.2
Black Caribbean	25	2.8	4	1.0
Mixed	20	2.2	4	1.0
Other	62	6.9	32	8.2
White British	312	34.6	141	36.2
White other	289	32.1	142	36.5

Table 7 note 1: ethnicity not reported for 5 women.

Table 7 note 2: ethnicity not reported for 1 woman requiring treatment.

Table 8: region of woman’s birth

World region	All women (n = 888)	Percentage (%)	Women requiring treatment (n = 384)	Percentage (%)
Africa	113	12.7	30	7.8
Asia	83	9.3	37	9.6
Eastern Europe	249	28.0	125	32.6
Rest of Europe	41	4.6	18	4.7
UK	356	40.1	152	39.6
Other	46	5.2	22	5.7

Table 8 note 1: country of birth not reported for 18 women.

Table 8 note 2: country of birth not reported for 6 women requiring treatment.

Table 9: timing of arrival in the UK

Timing of arrival	All women born abroad (n = 354)	Percentage (%)	Women requiring treatment born abroad (n=150)	Percentage (%)
During pregnancy	27	8.0	21	13.9
Equal to or less than 1 year before conception	13	3.7	11	7.4
1 to 5 years before conception	148	41.8	83	55.3
More than 5 years before conception	166	46.9	35	23.3

Table 9 note 1: timing of arrival not reported for 196 women born abroad.

Table 9 note 2: timing of arrival not reported for 88 women requiring treatment born abroad.

Parity

There was inconsistent reporting of whether the woman was a primigravida (some specifying ‘0’ and others leaving the data point blank), resulting in an update to the ISOSS data collection forms. The number of previous livebirths and stillbirths was estimated using the information provided. This is displayed in table 10.

Table 10: parity

Parity	All women (n = 531)	Percentage (%)	Women requiring treatment (n = 245)	Percentage (%)
0	210	39.5	144	58.8
1	144	27.1	54	22.0
2	92	17.3	26	10.6
3	41	7.7	8	3.3
4	22	4.1	5	2.0
5 or more	22	4.1	8	3.3

Table 10 note 1: parity was not completed correctly for 375 pregnancies.

Table 10 note 2: parity was not completed correctly for 147 pregnancies for women requiring treatment.

Social circumstances

Socially complicating issues were reported for 26.0% of women who screened positive (236 of 906) with multiple issues reported for 93 women. A higher proportion of women requiring treatment reported socially complicating issues (33.6%, 131 of 390 women). A breakdown of the socially complicating issues is shown in table 11. Mental health issues were reported in 10.6% of pregnancies and 9.7% had social services involvement.

Table 11: socially complicating issues

Social issue	All women (n = 906)	Percentage (%)	Women requiring treatment (n = 390)	Percentage (%)
Mental health issues	96	10.6	53	13.6
Social services involvement	88	9.7	48	12.3
Housing concerns	62	6.8	38	9.7
Intimate partner violence	50	5.5	30	7.7
Drug or alcohol misuse	38	4.2	28	7.2
Other	42	4.6	15	3.8
Immigration problems	18	2.0	9	2.3
Prison	4	0.4	4	1.0
Sex work	4	0.4	2	0.5

Table 11 note: noteworthy issues in ‘other’ include:

• not engaging with health services (14)
• known or suspected female genital mutilation (FGM) (8)
• learning difficulties (2)
• other type of family abuse (3)
• financial issues (2)
• mobility issues (2)
• having no support during pregnancy (3)
• ‘not engaging with health services’ and ‘learning difficulties’ became their own categories from mid-2021 so will be reported on separately in future reports

Half of women were reported as being employed (50.7%, 397 of 783 women). A quarter of women were reported as unemployed and just over a fifth were homemakers (21.0%, 164 of 782 women). Just under 2% of women were reported to be students (see table 12).

Table 12: employment status of women

Employment status	All women (n = 782)	Percentage (%)	Women requiring treatment (n = 341)	Percentage (%)
Employed (full or part time)	397	50.7	173	50.7
Home	164	20.9	48	14.1
Student	14	1.8	6	1.8
Sick	6	0.8	3	0.9
Unemployed	201	25.7	110	32.3
Voluntary work	1	0.1	1	0.3

Table 12 note 1: employment status not known for 119 women and 4 women did not provide this information.

Table 12 note 2: employment status not known for 46 women requiring treatment, and 3 women did not provide this information.

For the majority of women, their main support during pregnancy was a cohabiting partner (77.4%, 613 of 792 women); 10.2% of women’s main support was a non-cohabiting partner (81 of 792) and 10.1% of women’s main support was a family member or a friend (80 of 792) (see table 13).

Table 13: main support in pregnancy

Main support	All women (n = 791)	Percentage (%)	Women requiring treatment (n = 352)	Percentage (%)
Partner (cohabiting)	612	77.4	263	74.7
Partner (not cohabiting)	81	10.2	38	10.8
Family or friend	80	10.1	40	11.4
Other	5	0.6	4	1.1
None	13	1.6	7	2.0

Table 13 note 1: main support during pregnancy not reported for 115 women.

Table 13 note 2: main support during pregnancy not reported for 34 of the women requiring treatment.

For those women who reported having a partner during pregnancy, over 60% of their partners were employed (501 of 604 women). Around 12% of partners were reported to be unemployed (91 of 604 women) (see table 14).

Table 14: partner’s employment status

Partner’s employment status	All women (n = 603)	Percentage (%)	Women requiring treatment (n = 261)	Percentage (%)
Employed (full or part time)	500	63.9	217	63.6
Home	3	0.4	1	0.3
Student	4	0.5	4	1.2
Sick	4	0.5	2	0.6
Unemployed	91	11.6	37	10.9
Retired	1	0.1	0	0.0

Table 14 note 1: partner’s employment status not reported for 90 pregnancies.

Table 14 note 2: partner’s employment status not reported for 40 pregnancies among women requiring treatment.

Language

English was spoken by 79.1% of women (717 of 906). Of those who spoke English, English was the first language for 56.9% of women (402 of 706).

Translation services were required for 23.1% of women (209 of 906). Of women requiring translation services, 96.6% (202) received translation through formal interpretation services. In 5 pregnancies, a family or friend interpreted at the women’s request. For one woman, an interpreter was not available, and one woman did not attend her appointments (see table 15). It is unclear if language issues were a contributory factor in the woman not attending appointments.

Table 15: translation services

Translation services	All women (n = 206)	Percentage (%)	Women requiring treatment (n = 116)	Percentage (%)
Independent person (phone or present)	202	96.7	112	96.6
No (other)	1	0.5	0	0.0
No (interpreter not available)	1	0.5	1	0.9
Family or friend	5	2.4	3	2.6

Table 15 note: translation services not reported for 3 women.

Maternal diagnosis

In 84.7% (727 of 858) of pregnancies, women were seen by the screening team within 10 working days to discuss their screen positive result. For 47 women (5.5%), this was more than 20 working days after their screen positive result was returned to maternity services.

Where women were not seen within the 10 working days standard (IDPS-S05), reasons included:

• 29 women had a delay in lab communicating results to screening team (result was available to view on the IT reporting system but the positive result had not been directly communicated to the screening team)
• 19 women did not attend (DNA) or did not engage with healthcare services
• 5 women had a delay in results being acted on by the screening team

For some women, there was more than one reason why the appointment was delayed.

During the COVID-19 pandemic, national guidance was issued to providers that results could be given to women virtually rather than face to face within 10 days. It is recognised that some respondents reported that they did not meet the 10-day face to face standard for this reason.

Over half (531 of 906) of women received their screen positive result by 13 weeks gestation (see table 16). Among the 112 women (12.3%) who screened positive after 20 weeks gestation, 5 were unbooked presenting in labour. A slightly higher proportion of women requiring treatment booked after 20 weeks gestation (15.9% vs 12.3% for the screen positive population overall).

IDPS programme guidance is that all women with a confirmed screen positive result should be referred to sexual health services. This includes women who go on to miscarry or terminate their pregnancy, or where the woman has already delivered by the time the screening result is available.

A referral to sexual health services was completed for 89.7% (813 of 906) of women. Among the 93 women reported as not referred to sexual health, the reasons reported were:

• 51 women’s cases were discussed with a sexual health service or equivalent, who determined no further treatment was necessary
• 9 women were already under the care of sexual health, including 2 women who transferred their care and were seen at their previous unit
• 4 women declined being referred to sexual health services
• 6 women had a miscarriage or termination before referral
• 1 woman went abroad
• 1 woman was a late booker
• 1 woman’s result was mistakenly not acted on by the screening team (this was reported and managed as a screening incident)

For 20 women, it was unclear whether a sexual health referral was completed and/or the screen positive results were discussed with a sexual health specialist. The wording of the question about sexual health referral was amended in mid-2021 to clarify this point in the IDPS screening pathway.

Of the 813 women referred to sexual health services, date of appointment was provided for 687 women (75.2%). Sexual health services are often not within the same provider for maternity services and so it was difficult for some providers to know when the women were seen. Some of these women had a pregnancy loss and so feedback from sexual health services was not always received by the maternity provider as the woman was no longer under their care.

Of the women referred to sexual health, 57.4% (394 of 687) were seen within 2 weeks, but 11.1% (76 of 687) were not seen until after 6 weeks from the date of first screen positive result. Reasons for being seen over 6 weeks included:

• women not attending appointments or not engaging with services
• issues with laboratory reporting
• COVID-19 impact on services
• women going abroad
• women transferring care
• delayed referral to sexual health by the screening team

Management of confirmed screen positive results

Table 16: gestation of first screen positive result in pregnancy

Gestation	All women (n = 906)	Percentage (%)	Women requiring treatment (n = 391)	Percentage (%)
Less than 10+0 weeks	225	24.8	92	23.6
10+0 to 12+6	306	33.8	120	30.8
13+0 to 19+6	263	29.0	116	29.7
20+0 to 29+6	69	7.6	33	8.5
30+0 weeks or more	43	4.7	29	7.4

Table 17: days to screening team appointment from date first positive

Number of days	All women (n = 858)	Percentage (%)	Women requiring treatment (n = 372)	Percentage (%)
0 to 10 working days	727	84.7	314	84.4
11 to 15 working days	65	7.6	30	8.1
16 to 20 working days	19	2.2	7	1.9
More than 20 working days	47	5.5	21	5.6

Table 17 note 1: information not provided for 49 women.

Table 17 note 2: Information not provided for 19 women requiring treatment.

Table 18: referral to sexual health services

Referral	All women (n = 906)	Percentage (%)	Women requiring treatment (n = 390)	Percentage (%)
Yes	813	89.7	381	97.7
No	93	10.3	9	2.3

Table 19: time to being seen by sexual health services from first positive result

Time	All women (n = 687)	Percentage (%)	Women requiring treatment (n = 367)	Percentage (%)
Less than 2 weeks	394	57.4	221	60.2
2 to 4 weeks	161	23.4	83	22.6
4 to 6 weeks	56	8.2	29	7.9
More than 6 weeks	76	11.1	34	9.3

Table 19 note 1: there were 813 women who were referred to sexual health services by the screening team but feedback on the dates seen was not provided for 126 women. This may include some miscarriages or terminations of pregnancy, so the women are no longer under antenatal care.

Table 19 note 2: date not reported for 23 women requiring treatment. This may include some miscarriages and terminations of pregnancy, so the women are no longer under antenatal care.

Women requiring treatment

Overall, 390 (43.0%) women who screened positive required treatment. An additional 2 women who did not require treatment were treated. They are therefore not included in this section of the report. However, the babies of these 2 women are included in follow-up data of the infants.

Among women requiring treatment, 91.8% (359) received treatment in pregnancy. There were 31 women who required treatment who did not receive it during pregnancy. This included:

• 8 women who were screened in labour
• 7 women who miscarried before referral
• 5 women who declined treatment (2 women reporting having been previously treated and declined further treatment despite medical advice and 3 women had unknown reasons for declining treatment and were all from Romania)
• 3 women who had a termination before referral
• 2 women who delivered before the referral could be actioned
• 2 women who were lost to follow-up
• 2 women who disengaged with care
• 2 women who went abroad

Time to treatment

Over a third of women (129 of 359) were treated by 13 weeks of pregnancy, with a fifth (74 of 359) not receiving treatment until after 20 weeks gestation. As previously discussed, this reflects the number of women booking later in their pregnancies. This included 49 women who booked and were screened after 20 weeks gestation.

Over half of women (186 of 359) were treated within 2 weeks of their first positive result in pregnancy, and 14.2% (51 women) were treated more than 6 weeks after their first positive result.

Where a reason for delay was reported, these included:

• 15 women not engaging with healthcare services
• 7 women having positive results that were not promptly communicated to the screening team by the laboratory
• 6 women going abroad during pregnancy
• 3 women were difficult to contact
• 2 women initially declined treatment

It is recognised that the COVID-19 pandemic may have contributed to delays to treatment in some cases.

Treatment summary

The majority of women who were treated received benzathine penicillin (343 of 359, 95.8%), in line with British Association of Sexual Health and HIV (BASHH) syphilis guidance. Six women were incorrectly treated with only macrolides. For these 6 pregnancies, the outcomes were:

• 2 infants with confirmed congenital syphilis
• 1 stillbirth with confirmed congenital syphilis
• 2 infants with no evidence of congenital syphilis
• 1 woman lost to follow-up prior to delivery (believed to have gone abroad)

The reasons reported for using macrolides were:

• 3 women had been previously treated and macrolide treatment was given as a precaution
• 3 women reported being allergic to penicillin

BASHH removed the use of macrolides from their guidelines for the treatment of syphilis in pregnancy in 2019.

There were 18 women (4.6%) who were retreated in pregnancy. Reasons for retreatment were:

• 4 women had no reduction in serology result for rapid plasma reagin (RPR)
• 9 women were thought to have been reinfected
• 5 women did not complete their initial treatment plan and had to restart treatment later in pregnancy

Clinical presentation

Of the women requiring treatment, 4.6% (17 of 390) had or reported symptoms when seen in sexual health services. Some women presented with more than one symptom. These symptoms included:

• 8 women with skin rash or macules
• 4 women with genital sores or ulcers
• 3 women with unusual vaginal discharge
• 3 women with mouth sores or ulcers
• 1 woman with swollen lymph nodes

Table 20: gestation at first treatment

Gestation	Number of pregnancies (n = 359)	Percentage (%)
Less than 13 weeks	129	35.9
13 to 20 weeks	157	43.7
More than 20 weeks	73	20.4

Table 21: time to treatment from date of first positive result

Time	Number of pregnancies (n = 359)	Percentage (%)
Less than 2 weeks	186	51.8
2 to 4 weeks	88	24.5
4 to 6 weeks	34	9.5
More than 6 weeks	51	14.2

Table 22: treatment summary

Treatment	Number of pregnancies (n = 359)	Percentage (%)
Benzathine penicillin	344	95.8
Ceftriaxone	3	0.8
Doxycycline	2	0.6
Macrolide	6	1.7
Other	1	0.3
Penicillin (other or not specified)	3	0.8

Treatment was not given to 32 women who were identified as requiring treatment.

For the 8 women screened in labour who required treatment:

• 4 were known to have completed treatment postnatally
• 1 started treatment but did not complete the course
• 2 were referred postnatally to sexual health services (although treatment was not known)
• 1 went abroad

Six of the infants received intravenous (IV) benzyl penicillin after birth and 1 infant did not complete treatment. Of the unbooked women, 2 infants were reported as having congenital syphilis (25.0%).

Pregnancy outcomes

Pregnancy outcomes are sought for all pregnancies where the woman required treatment for syphilis in pregnancy. Of the 390 pregnancies in women requiring treatment, 347 resulted in the registerable births of 349 infants. Of these, there were 3 stillbirths (0.8%, 2 singleton births and 1 demised twin) and 346 live births. There were 17 miscarriages (4.4% of pregnancies) and 8 terminations of pregnancy reported (reasons for termination are not collected). A full breakdown is shown in table 23.

Of the registrable births to women treated for syphilis during pregnancy, 62.0% delivered vaginally, 11.2% delivered by elective caesarean (compared to 13.0% in the general population) and 26.8% by emergency caesarean (compared to 16.0% in the general population for 2020). Data available from the NHS Digital Maternity Services Monthly Statistics.

The preterm delivery rate was 10.4% (see table 25), compared to a rate of 7.0% in the general population for 2020 (see Office for National Statistics (ONS) birth characteristics data for 2020). The proportion of infants born with a low birthweight (1.5 to 2.5kg) was 9.3%, and 2.6% were born with a very low birthweight (less than 1.5kg) (see table 26).

Table 23: outcome per pregnancy

Outcome	Number of pregnancies (n = 390)	Percentage (%)
Livebirth	345	88.5
Miscarriage	17	4.4
Termination of pregnancy	8	2.1
Stillbirth	2	0.5
Gone abroad	11	2.8
Lost to follow-up	7	1.8

Table 23 note: one pregnancy was not reported on the pregnancy outcome form. One twin pregnancy resulted in 1 live birth and 1 stillbirth, but has been counted under livebirth for that pregnancy.

Table 24: mode of delivery per pregnancy

Mode of delivery	Number of births (n = 347)	Percentage of births (%)	Percentage of births in general population (%) (NHS Digital 2020 to 2021 data)
Vaginal	215	62.0	64.5
Elective caesarean	39	11.2	14.6
Emergency caesarean	93	26.8	18.9

Figures in table 24 are for pregnancies resulting in livebirth and stillbirth. Twin deliveries are counted once (per pregnancy, not per infant).

Table 25: gestation at delivery (for livebirths and stillbirths)

Gestation	Number of births (n = 349)	Percentage of births (%)	Percentage of births in general population (%) (England 2020 ONS data)
Equal to or more than 37 weeks	311	89.1	92.3
Less than 37 weeks	38	10.9	7.7

Table 26: birthweight at delivery (for livebirths)

Birthweight	Number of infants (n = 345)	Percentage of infants (%)	Percentage of births in general population (%) (England 2020 ONS data)
2.5 kg or more	304	88.1	92.3
1.5 to 2.5 kg	32	9.3	6.0
Less than 1.5 kg	9	2.6	0.8

Birthweight not reported for 1 delivery.

Syphilis birth plan use

A birth plan outlining clinical care requirements for the infant following delivery was in place for 322 of 346 deliveries (93.1%). The BASHH syphilis birth plan was used in two-thirds of deliveries (237 of 348) while a quarter used an alternative local or other birth plan (85). For 26 deliveries, no birth plan was used. Reasons for this were:

• for 13 women, the maternity provider was not aware of or was not using the BASHH birth plan (unclear if a local alternative birth plan was used)
• 6 women were screened in labour
• 4 women had no birth plan received from sexual health services
• 1 woman was a late transfer of care
• 1 woman did not attend her sexual health appointment
• 1 woman delivered preterm before the birth plan was completed

Table 27: birth plan use per pregnancy (for livebirths and stillbirths)

Birth plan use	Number of pregnancies (n = 346)	Percentage (%)
No	26	7.5
Yes, BASHH syphilis birth plan	235	67.9
Yes, local or other birth plan	85	24.6

Birth plan use not reported for 1 delivery.

Infant outcomes

Of the 346 live infants, 57 infants (16.5%) were admitted to the neonatal unit compared to 15.1% in the general population (NHS Digital maternity statistics 2020 to 2021 data). Commonly reported reasons for admission included prematurity (11), breathing difficulties (10), and suspected or confirmed sepsis (12). Three infants were admitted for congenital syphilis.

There were 5 infants with confirmed congenital syphilis born to women with screen positive results requiring treatment. Of these, 1 woman presented unbooked in labour having received no antenatal care in England, with screening results returned after delivery.

Overall, congenital conditions were reported in 14 infants (4.1%) and of these, 2 had multiple conditions reported. These included trisomy 18, hydrops fetalis, talipes and brain conditions.

There were 2 neonatal deaths (0.6%) among deliveries to women requiring treatment; 1 infant died within 24 hours and the other infant at 10 days of age. Both infants were born preterm, suffered complications related to prematurity and did not have congenital syphilis. A collaboration with Mothers and Babies Reducing Risk by Audits and Confidential Enquiries (MBRRACE-UK) will look further at stillbirths, neonatal deaths and maternal deaths.

Admissions and congenital conditions

Table 28: neonatal unit admission

Neonatal unit admission	Number of infants (n = 342)	Percentage of infants (%)
No	285	82.4
Yes	57	16.7

Table 28 note: information not reported for 4 infants.

Table 29: congenital conditions for livebirths

Congenital conditions	Number of infants (n = 343)	Percentage of infants (%)
None	328	95.6
One condition	12	3.5
Multiple conditions	3	0.6

Table 29 note: information not reported for 3 infants.

Paediatric follow-up

All infants born to women who required treatment for syphilis in pregnancy should be followed up as a minimum at 3 months of age, as per BASHH guidelines. This section focuses on all infants born to women booked for antenatal care in 2020 who required treatment in pregnancy. Of the 344 surviving infants born to women requiring treatment for syphilis in pregnancy, 198 infants (57.6%) had a paediatric follow-up appointment reported to ISOSS. This includes the 5 infants with confirmed congenital syphilis, with paediatric reports pending for the remaining 146 infants.

Among the 193 infants with no clinical indication of congenital syphilis:

• 110 had a negative RPR over the age of 3 months and were discharged, or surveillance by ISOSS ceased
• 33 were still in follow-up at the time of report
• 19 were discharged based on negative RPR result less than 3 months of age
• 2 were discharged based on other test results (negative antibody or IgM (immunoglobulin M) at 3 months)
• 7 were discharged with no tests done
• 1 was treated due to concerns about serology and later discharged
• 21 were lost to follow-up or went abroad before 3 months of age

Of the 7 infants discharged with no tests carried out:

• 3 had no follow-up arranged as neonatology or paediatrics reported that they did not receive the birth plan or a referral
• 1 woman was thought to be low risk, treated with a macrolide and sexual health services indicated no paediatric follow-up was required
• 2 women were treated with 3 doses for late latent syphilis and sexual health services ultimately reported them as suggestive false positives and infant follow-up was not required
• 1 woman was treated at her own request, but treatment was not clinically indicated, and the infant was not referred for follow-up

Infant treatment for syphilis

Among the infants where there was no clinical indication of congenital syphilis, 14.5% (28 of 193) received treatment. Reasons for treatment were:

• 15 women had received inadequate treatment in pregnancy
• 2 women had no drop in RPR after initial treatment
• 9 infants born at a single maternity provider who have a local policy to treat all infants born to women requiring treatment for syphilis in pregnancy with 1 single dose of benzathine penicillin
• 1 infant due to serology concerns
• 1 infant for delayed infant testing

Clinical expert review panel: congenital syphilis review

Congenital syphilis is not a notifiable disease. ISOSS has received and investigated reports of congenital syphilis in live births and stillbirths in England since 2015. Data collection started in December 2019 and covers confirmed and suspected congenital syphilis.

The ISOSS team interview all the clinicians involved in the care of the woman and infant during and after pregnancy. Multiple clinicians are contacted for each review, starting with the reporting paediatrician, and expanded to include maternity, sexual health services, and others as required. Where care was provided by multiple units, the process is repeated for each unit to make sure as much information is collected as possible. This can include contacting medical advisors, primary care and safeguarding midwives where necessary.

Anonymised case summaries are produced and reviewed by the Clinical Expert Review Panel (CERP). The panel consists of relevant clinical specialists, including maternity, laboratory, paediatrics, sexual health services and other clinical specialists.

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 advisory group to inform national guidelines and policy

Case categorisation

Due to the complexities in diagnosing congenital syphilis, members of the congenital syphilis CERP recently developed the following definitions (listed below). Future reports will categorise infants reported to ISOSS under these 3 groupings following review and agreement by the CERP members.

Possible case

A possible infection would include all the following:

• woman had untreated or inadequately treated syphilis at delivery
• a reactive RPR in the infant’s serum (or no serology results available for the infant)
• infant displayed no features of probable or confirmed congenital syphilis

Probable case

The woman had untreated or inadequately treated syphilis at delivery, there was a reactive RPR in the infant’s serum and at least one of the following:

• any evidence of congenital syphilis on physical examination
• any evidence of congenital syphilis on radiographs of long bones
• a positive cerebral spinal fluid (CSF) RPR test
• infant’s RPR titre 4-fold or greater than that of the woman (note a lower RPR titre does not exclude the diagnosis)

Confirmed case

A probable case plus at least one of the following:

• demonstration of Treponema pallidum by darkfield microscopy or polymerase chain reaction (PCR) of the umbilical cord, placenta, neonatal nasal discharge, body fluids or skin lesion material
• detection of T. pallidum specific IgM

Findings

There were 39 infants (live and stillbirths) with congenital syphilis in England from 1 January 2015 reported to ISOSS by the end of 2021 and discussed by the CERP (see table 30). Of these, 24 infants were included in the ISOSS retrospective review covering cases reported to June 2020, with a further 15 infants reported to ISOSS since June 2020.

The highest number (11 infants) was reported in those born in calendar year 2019, however this includes a set of twins.

Table 30: number of infants with confirmed congenital syphilis in England by calendar year of birth

Year of birth	Number of infants	Number of births in England	Rate per 1,000 births
2015	1	667,351	0.002
2016	5	666,052	0.008
2017	6	649,473	0.008
2018	3	628,171	0.005
2019	11	612,851	0.018
2020	7	585,195	0.012
2021	6	595,948	0.010

Table 30 note 1: the 2019 data includes one set of twins.

Table 30 note 2: numbers are expected to increase for most recent years (2020 and 2021).

Table 30 above includes all reported infants with congenital syphilis by year of birth, as reviewed by the CERP by the end of 2021. The paediatric outcomes section of this report discusses infants born to women booked in 2020, meaning a difference in the reported number discussed.

Demographics

Among the 15 infants reported since 2020, the ethnic origin of the women was white British (12), white other (2) and Asian (1). Most infants (13 of 15) were born to women who were born in the UK and 2 to women born in Romania. The women from Romania both required and received translation services. Median maternal age was 28 years (IQR: 24 to 34 years). Complicating social circumstances at the time of pregnancy were reported in 6 of the 15 recently reviewed reports, with many women experiencing multiple issues.

Table 31: Socially complicating issues experienced by women

Complicating issues reported	Number of women (n = 15)	Cumulative for all reported congenital syphilis reports since 2015
Any issues reported	6	20
Safeguarding or social services involvement	4	14
Foster care or adoption	2	8
Mental health issues	1	7
Drug or alcohol misuse	2	6
Insecure housing	2	9
Intimate partner violence	1	7
Sex work	1	3
Issues engaging with healthcare services	4	6

Table 31 note: issues may overlap with more than one issue per woman.

Table 32: number of infants reported with congenital syphilis by region of birth

Region of infant’s birth	Number of new infants (n = 15)	Percentage of infants (%)	Cumulative number of infants since 2015 (n = 39)	Percentage of infants (%)
London	1	6.7	6	15.4
North East, Yorkshire and the Humber	4	26.6	9	23.1
North West	4	26.6	9	23.1
Midlands	2	13.2	3	7.7
East of England	3	20.0	4	10.3
South East	1	6.7	8	20.5
South West	0	0	0	0

Table 33: timing of woman’s diagnosis

Timing of woman’s diagnosis	Number of new infants (n = 15)	Percentage of infants (%)	Cumulative number of infants since 2015 (n = 39)	Percentage of infants (%)
Diagnosed antenatally (screening or other referral)	4	26.7	12	30.8
Diagnosed postnatally	11	73.3	27	69.2

Table 33 note: data from row ‘Diagnosed postnatally’ includes 5 women who did not access antenatal care and were screened in labour.

Table 34: number of previous livebirths

Previous livebirths	Number of women	Percentage of women (%)
0	4	26.7
1	5	33.3
2 or more	6	40.0

Contributing factors

Of the 15 infants reported since June 2020, all women were offered and accepted screening either in pregnancy or at the time of delivery where antenatal care was not accessed.

Women who screened positive in pregnancy

Nine women had a confirmed screen positive antenatal screening result. Of these 9, 4 women presented unbooked in labour having not accessed antenatal care. These 4 women all accepted screening in labour and the results were returned postnatally.

One woman had a negative screening result in early pregnancy but was retested later in pregnancy following concerns for fetal wellbeing. An emergency delivery of the infant took place on the same day and the woman’s repeat test result became available postnatally.

For 2 of the remaining 4 women who received a screen positive result antenatally, 2 women booked late for antenatal care (over 20 weeks) and delivered before treatment was completed and/or had maximum impact on the infection. One of these women delivered preterm only a week after booking. This resulted in a neonatal death, and it was unclear if congenital syphilis played a part in this. The other woman declined screening until late in pregnancy but delivered 2 weeks later before treatment was completed.

The final 2 women reported having a penicillin allergy and were both incorrectly treated with macrolides. One of these pregnancy outcomes was a stillbirth that was attributed to congenital syphilis.

Infant birth plans were in place for 3 of the 4 women diagnosed antenatally. The remaining woman who screened positive antenatally was identified shortly before delivery.

Women who screened positive postnatally

Six of the 15 transmissions were to women who had a negative screening result in their pregnancy – meaning the women acquired syphilis later in their pregnancy. Of these women:

• 4 were diagnosed following their infant’s symptomatic diagnosis
• 2 had a screen positive result in a subsequent pregnancy triggering testing of the previous infant

Infant outcomes

There were 13 livebirths and 2 stillbirths. Of the 13 liveborn infants, 6 were delivered preterm. The majority were vaginal deliveries. Eight of the infants presented with clinical symptoms. These included hepatosplenomegaly, thrombocytopenia, bone fractures, rashes and lesions. Over half of the infants were diagnosed at under 1 month of age. The 2 infants diagnosed over 12 months of age were born to women who screened positive for syphilis in a subsequent pregnancy.

Table 35: infant outcomes

Infant outcome	Number of infants	Percentage of infants (%)
Livebirth	13	86.7
Stillbirth	2	13.3

Table 35 note: includes 1 neonatal death.

Table 36: gestation at delivery

Gestation at delivery	Number of infants	Percentage of infants (%)
Less than 37 weeks	6	40.0%
Equal to or more than 37 weeks	9	60.0%

Table 36 note: the data for ‘Less than 37 weeks’ includes 2 stillbirths where labour was induced following diagnosis of fetal death in utero.

Table 37: mode of delivery

Mode of delivery	Number of women	Percentage of women (%)
Elective caesarean	1	6.7
Emergency caesarean	1	6.7
Vaginal delivery	13	86.7

Table 37 note: data for ‘Vaginal delivery’ includes 2 stillbirths.

Table 38: age at diagnosis (13 livebirths only)

Age at diagnosis	Number of infants	Percentage of infants (%)
Less than 1 month	7	53.8
1 to 6 months	3	2.3
6 to 12 months	1	7.6
More than 12 months	2	1.5

Recommendations: progress and new recommendations

Background

Since June 2020, a further 15 infants with confirmed congenital syphilis were reported to ISOSS (born between the years of 2017 and 2021) and were reviewed by the CERP. Below are the findings from these reviews, including a new recommendation made by the panel.

Negative now

As in the previous report, 6 infants were found to have congenital syphilis despite their mothers having a screen negative result early in pregnancy. This means the women acquired syphilis following their initial screening. The importance of women understanding that they were negative at the time the sample was taken was highlighted again. Women should have this and the potential risks for becoming infected relayed to them when receiving their negative results.

Testing for congenital infections (TORCH screen – toxoplasmosis, rubella, cytomegalovirus, herpes simplex virus, and HIV)

As in the previous congenital syphilis report, a reliance on the group of tests known commonly as a ‘TORCH’ screen was used in isolation when there was a suspicion of congenital infection, thereby missing testing for syphilis and delaying diagnosis.

Referral to sexual health services

Missed opportunities to refer pregnant women to sexual health services where there was evidence or suspicion of a sexually transmitted infection was evident. This resulted in delayed or missed diagnosis and mismanagement in pregnancy.

Multidisciplinary team approach

The lack of well-functioning and well-represented multidisciplinary teams (MDTs) was apparent in many cases. Infants with congenital syphilis infections were seen where healthcare services were aware of maternal infection antenatally, but specialities (for example, paediatrics) were unaware, had not put care plans in place prior to delivery or care plans were not followed for the infant.

Continuity of care

It is important to acknowledge the role and impact that continuity of care or expertise provided by screening midwives and infectious diseases specialists can have on this vulnerable population who often face many health inequalities. The difference made by providing continuity of care to women who screen positive for any of the 3 infections covered by the IDPS programme was evident in both the syphilis and HIV CERPs.

The importance of improving care for vulnerable groups has been highlighted by NHS England. Core20PLUS5 is a national approach to support the reduction of health inequalities at both national and system level. The approach defines a target population cohort – the ‘Core20PLUS5’ – and identifies 5 focus clinical areas requiring accelerated improvement. One of these areas is around maternity care: ‘…ensuring continuity of care for 75% of women from black, Asian and minority ethnic communities and from the most deprived groups.’

It also puts a focus on inclusion health groups, which includes:

• people experiencing homelessness
• people with drug and alcohol dependence
• vulnerable migrants
• Gypsy, Roma and Traveller communities
• sex workers
• people in contact with the justice system
• victims of modern slavery
• other socially excluded groups

Urgent screening

Women presenting unbooked in labour made up a significant proportion of the occurrences where infants were found to have congenital syphilis. Although screening samples were taken from women in labour, the urgency of the test was not always appropriately communicated to laboratory staff, results were not followed up, screening teams were not informed and women and infants were discharged without results being available. This resulted in delayed diagnosis and treatment for both the women and their infants and, in some cases, women being uncontactable following discharge to discuss the results.

Women presenting in labour unbooked having received no antenatal care often have unique and challenging social issues and are a particularly vulnerable group. The IDPS programme laboratory handbook provides guidance on the management of urgent screening results for women in labour or who are likely to deliver before confirmed results can be issued.

Migrant health

Where infants with congenital syphilis were born to women who were not born in the UK, it was noted that the women arrived in the country during pregnancy. This meant that their screening was often completed at a later gestation, resulting in less time to successfully complete treatment, especially when complicated by premature delivery.

Education and shared learning

Building on the previous recommendation of raising awareness across services of congenital syphilis, the issue of shared learning from the vertical transmission reviews was highlighted by CERP members. Healthcare providers involved with the reviews reported a desire to receive feedback from the clinical expert review panel. There were discussions around potential education events and the use of anonymised case scenarios to support raising awareness and improving care.

New action for the IDPS programme

IDPS team to develop ways of feeding back to providers who report infants with congenital syphilis to ISOSS following CERP, along with wider learning opportunities for maternity, paediatric and sexual health services.

Progress on previous recommendations

In the previous report into congenital syphilis, 13 recommendations were made following the review of the 24 infants with confirmed congenital syphilis reported to ISOSS. Below is an update on how each of these recommendations has been or is being addressed by the IDPS screening programme.

Recommendations 1, 2 and 3

Strengthen and promote guidelines for healthcare staff to increase retesting following the identification of women who may have been exposed after a negative screening test result.

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

Referral should be made to sexual health services at any point in pregnancy and irrespective of antenatal HIV, hepatitis B or syphilis screening results for women presenting with a suspected or confirmed sexually transmitted infection in pregnancy.

Progress

These recommendations have been acted on by:

• updates being made to the programme handbook
• the updated laboratory handbook now referring to the ‘negative now’ message being added to laboratory reports
• plans to raise awareness as part of the IDPS syphilis quality improvement project, for example via maternity provider workshops
• strengthening messages in the next update of the elearning for healthcare (elfh) IDPS online training module

Recommendation 4

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

Progress

Promote discussion at booking among maternity staff via screening leads (to be communicated during syphilis quality improvement project workshops and in the next e-learning update).

Recommendations 5, 6, 7 and 11

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.

Promote the use of birth plans, including the BASHH birth plan, to facilitate appropriate initial and follow-up care of infants in line with BASHH guidelines for all women who screen positive for syphilis.

The screening team must be informed when a woman has not engaged with sexual health services following referral for a positive screening result. This is so that care plans and alerts can be in place to support appropriate treatment for the woman and infant if and when she engages with maternity or other hospital services.

Review the care pathway for women who screen positive for syphilis. It is essential that feedback from sexual health services is received, and care plans are in place for the woman and infant before delivery, including where a woman did not require treatment or where a woman did not engage for treatment.

Progress

These recommendations have been acted on by:

• plans to include additional information on what is meant by MDT including suggested membership and ways of working in the programme handbook update
• the IDPS syphilis quality improvement project new pathway will stipulate that birth plans are to be completed by sexual health service for all women assessed and shared with screening teams following assessment and treatment (where required); it will then be the responsibility of screening team to ensure birth plans are disseminated and made available before delivery
• planned inclusion of the use of birth plans in the BASHH syphilis pregnancy guideline
• information about the importance of MDT working and the benefits of having a lead or link clinician being added to the new BASHH syphilis pregnancy guideline
• information around communication back to maternity services being included in the updated BASHH management of syphilis in pregnancy guidelines
• wording being included in the updated sexual health service specification about the importance of prioritising maternity referrals and the need for continuous liaison with maternity services for all women referred

Recommendation 8

Strengthen in the IDPS programme handbook the importance of using formal interpretive services (not friends or family) for women who do not speak fluent English, to inform them of positive screening results.

Progress

The programme handbook has been updated to include the use of formal interpretive services.

More recent reporting indicates good compliance with the use of interpreting services, with only a minority of women declining formal services in favour of friends or family.

Recommendations 9 and 12

Provide guidance on the importance of following up screen positive results for postnatal women, including women who are screened in labour.

Review the pathway in relation to urgent screening of women who present in labour unbooked or with no reliable evidence of screening during the pregnancy, including in the guidance in the laboratory handbook.

Progress

These recommendations have been acted on by:

• review and inclusion of the urgent screening process in the updated IDPS laboratory handbook
• inclusion of the process in the current IDPS programme handbook update (in progress)
• being addressed in the IDPS syphilis quality improvement project, including advice about the management of urgent screening in the new pathway and accompanying guidance document

Recommendation 10

To discuss with the newborn infant physical examination (NIPE) screening programme team about the ability to raise awareness to check for IDPS results in a woman’s notes when the infant is examined.

Progress

Contact made with NIPE programme team to look at any possible options with Smart4NIPE (S4N) system reminders.

Recommendation 13

Support the ISOSS team and CERP members in raising awareness of congenital syphilis. This can be done via attendance and presentations at conferences, articles in journals, newsletters and engagement with different networks.

Progress

ISOSS University College London (UCL) team continue to attend conferences and present findings where appropriate and supported by the IDPS programme and NHS England.

Summary and next steps

The first year of national maternity syphilis surveillance has shown that two-fifths of women who screen positive for syphilis in pregnancy require treatment. The majority of these women were correctly treated with benzathine penicillin during pregnancy. Issues with treatment in pregnancy included:

• incorrect use of macrolides
• women booking late in pregnancy or arriving in labour meaning there was no time to receive treatment before delivery
• disengagement with clinical care

The incidence of congenital syphilis in England is below the World health Organisation (WHO) elimination threshold of less than 0.5 per 1,000 live births (see the WHO strategy for global elimination of syphilis). Among the small number of transmissions occurring in England, issues with clinical management have been identified. Maternity data collection and CERP reviews highlight the importance of following the IDPS screening pathway, including all screen positive women receiving a timely referral to sexual health services, appropriate treatment and follow-up. The report also highlights the potential health inequalities faced by women.

The known poor birth outcomes associated with congenital syphilis continue to be seen through CERP reviews, including several stillbirths, high premature delivery rate and congenital conditions.

Paediatric syphilis surveillance shows variation in follow-up practice, especially surrounding the infant testing schedule. Issues were also identified relating to availability of birth plans to neonatal and paediatric teams and interpretation of national guidelines.

ISOSS is the only population-level data on maternal and congenital syphilis in the England, and will continue to monitor key areas of interest, including demographics, emerging trends and use of clinical pathways across maternity and paediatrics.

By working closely with valued maternity and paediatric respondents across the country, ISOSS can provide high quality and timely data to inform guidelines and the national screening programme. Additional impact is also gained from ISOSS’ surveillance of the other screened for infections in pregnancy.

The syphilis quality improvement project

The IDPS syphilis quality improvement project is the maternity strand of the PHE syphilis action plan published June 2019, which aims to reduce the number of syphilis infections in England.

With a rise in heterosexual transmission of syphilis seen in recent years, there is a concern that rates of syphilis in pregnancy will start to increase. This highlights the need to ensure that both screening coverage and management of syphilis infection in pregnancy is effective.

The surveillance of syphilis in pregnancy and review of infants reported to have congenital syphilis has provided a wealth of evidence to support the project. The report’s key themes and recommendations have fed directly into the project workstreams and have helped to ensure that planned interventions are relevant.

One of the key workstreams is the introduction of a management pathway and accompanying guidance. The end-to-end pathway formalises the role of antenatal screening teams in coordinating the management of syphilis infection in pregnancy, from notification of the result by the laboratory to the discharge of woman and infant following delivery. The new guidance aims to make practice consistent across providers, improving the timeliness of referral for assessment and treatment and increasing the use of birth plans and professional communication between specialities. It is also expected to bring about an improvement in neonatal follow-up.

Another important area of the project is the ‘negative now’ message, which has become an important theme throughout all the IDPS programmes’ new and updated publications in an effort to raise the profile of sexual health awareness in pregnancy among healthcare professionals and the women they care for.

The project has received input by sexual health colleagues and guidance written in conjunction with the British Association of Sexual Health and HIV (BASHH) management of syphilis in pregnancy guideline (currently in development), to ensure that guidance on screening and clinical management is consistent.

Background

Data collection processes

ISOSS HIV surveillance has been running for over 30 years, syphilis surveillance commenced in 2020 and hepatitis B in 2021. Figure 1 below shows the timeline of data collection by ISOSS during pregnancy and after the baby is born.

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

The timeline in figure 1 above describes 6 data collection points.

1. Green Card reporting (from approximately 12 weeks gestation): all HIV, syphilis and hepatitis B screen positive pregnancies booked for antenatal care in the last quarter are reported to ISOSS. The green card can be edited throughout the quarter, but the submission happens at the end of a quarter.
2. Pregnancy notification form (from approximately 12 weeks gestation): initial details of pregnant woman, care in pregnancy and pregnancy status. This form is generated for each woman following the submission of the green card.
3. Pregnancy outcome form (birth): woman’s delivery details and initial care of the infant recorded and reported. This form is available around the expected date of delivery but can be released earlier on request in cases of premature birth.
4. Paediatric notification form (1 to 6 months after birth): initial details and test results of infants seen for HIV (3 to 6 months) and syphilis (1 to 2 months) paediatric follow-up. Generated using maternity reports where possible.
5. 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.
6. Paediatric HIV follow-up form: generated for all HIV-exposed infants requesting 22 to 24 month confirmatory antibody test to establish infection status.

Note that diagnosed children may be reported to ISOSS at any age when seen for paediatric care.

Data validation

The ISOSS team conduct detailed matching of data reports across pregnancies and paediatric reports. The data 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 is checked at each stage and queried directly with respondents where inconsistencies are identified, or data is missing.

Acknowledgements

We would like to thank all those involved in collecting the data, producing the report, and most of all those from the NHS who deliver the infectious diseases in pregnancy screening programme. We would like to acknowledge the important contributions made by the members of our CERP and NHS providers in relation to reviewing reports of infants with congenital syphilis.

Congenital Syphilis Clinical Expert Review Panel (CERP) members

The Congenital Syphilis CERP members who contributed to the case reviews included in the report (2020 to 2021) are:

• Dr Shalini Andrews: GUM Consultant, Central and North West London NHS Foundation Trust

• Dr Rachel Bower: Consultant Community Paediatrician and Medical Advisor to the Adoption and Permanence Panel

• Sarah Dermont: IDPS Programme Project Coordinator, NHS IDPS programme, NHS England

• Dr Dyan Dickins: Obstetrician, Liverpool Women’s Hospital NHS Foundation Trust

• Dr Sara Eisen: Consultant Paediatrician, University College London Hospitals NHS Foundation Trust

• Anette Elbech: Infectious Diseases Specialist Midwife, Chelsea and Westminster Hospital NHS Foundation Trust

• Dr Helen Fifer: IDPS Laboratory Advisor and NIS Microbiologist, UKHSA

• Kate Francis: ISOSS Coordinator, UCL Great Ormond Street (GOS) Institute of Child Health

• Dr Shazia Hoodbhoy: Consultant Neonatologist at The Rosie Hospital, Cambridge University Hospitals NHS Foundation Trust

• Dr Chrissie Jones: Consultant in Paediatric Infectious Diseases, University of Southampton and Southampton Children’s Hospital

• Professor Margaret Kingston: Consultant Physician in genitourinary medicine, Associate Medical Director, Manchester University Hospitals NHS Foundation Trust

• Dr Paddy McMaster: Consultant in Paediatric Infectious Diseases, North Manchester General Hospital Women and Children’s, Manchester University Hospitals NHS Foundation Trust

• Jenny Neal: IDPS Programme Manager, NHS IDPS programme, NHS England

• Nadia Permalloo: Head of Quality Assurance Development (Clinical), Screening Quality Assurance Service, NHSE

• Alison Perry: Specialist Screening Midwife, Leeds Teaching Hospitals NHS Trust

• Helen Peters: ISOSS Manager, UCL GOS Institute of Child Health

• Ailsa Pickering: Clinical Nurse Specialist, Great North Children’s Hospital, The Newcastle Upon Tyne Hospitals NHS Foundation Trust

• Dr Cara Saxon: Consultant Physician in Genitourinary Medicine, Manchester University Hospitals NHS Foundation Trust

• Laura Smeaton: IDPS Programme Project Manager, NHS IDPS programme, NHS England

• Professor Claire Thorne: Professor of Infectious Disease Epidemiology, Population, Policy and Practice Department, UCL GOS Institute of Child Health (CHAIR)

• Dr Judith Timms: Clinical Advisor, Laboratory Lead, NHS IDPS programme, NHS England