ISOSS Syphilis report 2023
Published 16 May 2024
Applies to England
1. Introduction
The Integrated Screening Outcomes Surveillance Service (ISOSS) carries out the surveillance of pregnancies to women with HIV, hepatitis B and syphilis, their babies and other children diagnosed with HIV, hepatitis B and congenital syphilis in England, as part of the NHS Infectious Diseases in Pregnancy Screening Programme (IDPS).
This annual report focuses on pregnancies to women who screened positive for syphilis and booked for antenatal care in England from 01/03/2021 to 31/03/2022. Previous reports have been presented by calendar year but are now presented by financial year in line with other national screening programme publications. All screen positive pregnancies reported to ISOSS with data submitted by the end of September 2023 are included. Paediatric outcome reporting includes infants born to women requiring treatment in pregnancy (not all infants are born to women who screen positive). Data presented on congenital syphilis includes cumulative data from 2015, building on the previous ISOSS 2021 congenital syphilis report.
2. IDPS programme standards summary statistics
Screening standards data is submitted by providers to NHS England. This report includes data relating to screening year 2021 to 2022 which refers to 1 April 2021 to 31 March 2022. This data is collected separately from ISOSS surveillance of women with a screen positive result and their infants and there are differences in the numbers between the two data sources due to data quality issues including duplicate records and following transfers of care.
In screening year 2021 to 2022 in England:
- about 635,000 pregnant women entered the antenatal screening pathway
- individual screening coverage for antenatal HIV, hepatitis B and syphilis screening was 99.8%
- 1.64 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 2018 to 2019 to screening year 2021 to 2022
2018 to 2019 | 2019 to 2020 | 2020 to 2021 | 2021 to 2022 | |
---|---|---|---|---|
Returns included/expected | 144/146 | 139/143 | 139/142 | 138/142 |
Women with screen positive results†: rate/1,000 women tested | 1.52 | 1.50* | 1.59* | 1.64 |
Screen positive, requiring treatment: rate/1,000 women tested | 0.69 | 0.63 | 0.72 | 0.66 |
† Known false positive results are not included in the number of screen positives.
*The rate for total screen positive women is based on a count that has been rounded to the nearest multiple of 5 to prevent disclosure by comparison with other published data.
3. Syphilis reporting to ISOSS
The process and points in time for data collection can be seen in the data collection processes section. Data is reported to ISOSS by 151 different maternity providers, some of which are part of bigger NHS Trusts who report their screening standards data in a combined format that is published in IDPS programme screening standards data reports.
In 2021-22, 100% of maternity providers in England submitted their initial notifications to ISOSS for women with screen positive results for syphilis via the quarterly reporting system on the ISOSS portal (604 of 604 green cards completed). Antenatal notification forms were subsequently returned for 100% of screen positive pregnancies, and pregnancy outcomes forms were submitted for 99.7% of pregnancies to women requiring treatment for syphilis in pregnancy.
4. Syphilis overview
There were 934 pregnancies to 928 women who screened positive for syphilis in pregnancy, with a booking date between 1 April 2021 and 31 March 2022 reported to ISOSS by 30 September 2023.
4.1 Syphilis confirmed screen positive results
Overall, 386 of 934 (41.3%) pregnancies with a positive result for syphilis required treatment, a similar proportion to those booked in 2020. Newly diagnosed women requiring treatment accounted for 31.9% of screen positive results and 9.3% of women requiring treatment were previously diagnosed. Three women were reported to have another treponemal infection (all yaws) so are included in the screen positive breakdown but excluded from subsequent analyses (Table 2). Figure 1 shows the breakdown and treatment requirements. Four women who were found to be positive for syphilis in pregnancy had previously screened negative earlier in their pregnancy. Among these, two women were retested by sexual health services due to clinical indications, one was rescreened when she transferred care in pregnancy, and one was tested following stillbirth investigations showing the child was positive for syphilis.
Table 2: Screen positive breakdown
Number of pregnancies | Percentage (%) | |
---|---|---|
Newly diagnosed requiring treatment | 292 | 31.3 |
Previously diagnosed requiring treatment | 88 | 9.4 |
Previously diagnosed not requiring treatment | 532 | 57.0 |
Requiring treatment (unclear diagnosis history) | 6 | 0.6 |
Other treponemal infections | 3 | 0.3 |
Not known (not seen by GUM) | 13 | 1.4 |
Total | 100 |
Table 2 note 1: 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.
Figure 1: Diagnosis and treatment status of syphilis screen positive pregnancies booked in 2021-22
Overall, 7.3% of women who screened positive for syphilis had 1 co-infection, and 1.2% had 2 or more co-infections reported. In total, 1.8% of women had hepatitis B virus (HBV) co-infection and 1.1% were co-infected with HIV (Table 3).
Table 3: Coinfections in pregnancy
Number of pregnancies (931) | Percentage (%) | |
---|---|---|
HIV | 10 | 1.1 |
HBV | 17 | 1.8 |
HCV | 11 | 1.2 |
Other coinfections reported included chlamydia, herpes simplex virus, trichomoniasis, and gonorrhoea.
5. Pregnancy management
5.1 Antenatal booking
In almost half (49.7%) of pregnancies with a screen positive result for syphilis, women had booked for antenatal care by 10 weeks gestation, compared to 70.7% in the general pregnant population. This was an increase on the 44.3% in 2020. Women who booked for antenatal care after 20 weeks gestation with a screen positive syphilis result accounted for 8.7% of pregnancies (Table 4), compared to 3.3% in the general population.
Ten women (1.1%) with a screen positive result for syphilis had received no antenatal care in England, arriving at the maternity care provider unbooked in labour (9 of 10 required treatment for syphilis). Of the 394 women requiring treatment for syphilis, 19 transferred care to a different maternity provider during their pregnancy.
Table 4: Gestation at booking
All women with a syphilis screen positive result | Percentage (%) | Women requiring treatment in pregnancy | Percentage (%) | General pregnant population (%) | |
---|---|---|---|---|---|
Less than10+0 weeks | 463 | 49.7 | 176 | 45.6 | 70.7 |
10+0 - 12+6 weeks | 252 | 27.1 | 103 | 26.7 | 25.5 |
13+0 - 19+6 weeks | 125 | 13.4 | 54 | 14.0 | 6.7 |
20 weeks or more | 91 | 9.8 | 53 | 13.7 | 3.3 |
Total | 931 | 100 | 386 | 100 | NA |
Table 4 note 1: 20 weeks or more includes 10 unbooked women who arrived in labour.
5.2 Region of booking
London had the highest number of pregnancies in women with a screen positive result for syphilis (23.2%) with the lowest number of pregnancies being in the South West (3.5%), comparable to 2020 bookings. A full breakdown of pregnancies with screen positive results by region is shown in Table 5 and Figure 2.
Table 5: Number of screen positive pregnancies by region of booking
All women with a syphilis screen positive result | Percentage (%) | Women requiring treatment in pregnancy | Percentage (%) | |
---|---|---|---|---|
London | 216 | 23.2 | 74 | 19.2 |
Midlands | 189 | 20.3 | 76 | 19.7 |
East of England | 80 | 8.6 | 34 | 8.8 |
North East, Yorkshire and the Humber | 177 | 19.0 | 75 | 19.4 |
North West | 146 | 15.7 | 71 | 18.4 |
South East | 90 | 9.7 | 40 | 10.4 |
South West | 33 | 3.5 | 16 | 4.2 |
total | 931 | 100 | 386 | 100 |
Table 5 note 1: total proportion of pregnancies not equal to 100 due to rounding.
Figure 2: Regional breakdown of screen positive pregnancies
6. Maternal Demographics
6.1 Maternal age
Among screen positive pregnancies, the median maternal age at expected date of delivery was 30.9 years (range: 17 to 51 years, interquartile range (IQR): Q1: 26.1, Q3: 36.3 years). Over a fifth of pregnancies were in women aged under 25 years, and around one in ten were in women over 40 years. Women who required treatment tended to be younger (median age 29.1 years, range: 17 to 50 years, IQR: Q1: 23.9, Q3: 35.3 years) and a higher proportion of these women were under 25 years of age compared to all women with screen positive results, (Table 6).
ISOSS started collecting data on assisted conceptions in 2021. Among the 931 women who booked and screened positive for syphilis in 2021-22 there were 24 IVF pregnancies and a sixth (4/24) were in women aged 40 years or older. Among IVF pregnancies, 14 were to newly diagnosed women requiring treatment and 10 to women already diagnosed and previously adequately treated.
Table 6: Maternal age at delivery
Age group | All women with a syphilis screen positive result | Percentage (%) | Women requiring treatment in pregnancy | Percentage (%) |
---|---|---|---|---|
Less than 25 years | 194 | 20.8 | 119 | 30.8 |
25 to 29 years | 230 | 24.7 | 88 | 22.8 |
30 to 34 years | 224 | 24.1 | 84 | 21.8 |
35 to 39 years | 184 | 19.8 | 61 | 15.8 |
40 to 44 years | 89 | 9.6 | 31 | 8.0 |
45+ years | 10 | 1.1 | 3 | 0.8 |
total | 931 | 100.1 | 386 | 100 |
Table 6 note 1: total proportion of pregnancies not equal to 100 due to rounding.
6.2 Ethnic origin
In 2021-22, 69.5% of all syphilis screen positive pregnancies were in women of white ethnicity (Table 7). Overall, 46.8% of women were born in the UK (nearly 50% among women requiring treatment) and around a quarter were born in Eastern Europe (Table 8). Among women born in Eastern Europe the most common country of birth was Romania (159/228, 69.7%). Compared to 2020, there was a higher proportion of UK born women and fewer born in Eastern Europe.
Table 7: Ethnic origin
Ethnicity | All women with a syphilis screen positive result | Percentage (%) | Women requiring treatment in pregnancy | Percentage (%) | |
---|---|---|---|---|---|
White British | 383 | 41.5 | 171 | 44.8 | |
White other | 258 | 28.0 | 112 | 29.4 | |
Black African | 90 | 9.8 | 22 | 5.8 | |
Black Caribbean | 20 | 2.2 | 7 | 1.8 | |
Asian | 69 | 7.5 | 28 | 7.3 | |
Other | 64 | 6.9 | 29 | 7.6 | |
Mixed | 39 | 4.2 | 12 | 3.1 | |
total | 923 | 100.1 | 381 | 100 |
Table 7 note 1: Data not reported for 8 women for all screen positive pregnancies.
Table 7 note 2: Data not reported for 5 women requiring treatment in pregnancy.
Table 7 note 3: total proportion of pregnancies not equal to 100 due to rounding.
Table 8: Region of woman’s birth
World region | All women with a syphilis screen positive result | Percentage (%) | Women requiring treatment in pregnancy | Percentage (%) |
---|---|---|---|---|
UK | 427 | 46.6 | 190 | 49.6 |
Eastern Europe | 228 | 24.9 | 95 | 24.8 |
Rest of Europe | 44 | 4.8 | 27 | 7.1 |
Africa | 99 | 10.8 | 24 | 6.3 |
Asia | 76 | 8.3 | 30 | 7.8 |
Other | 42 | 4.6 | 17 | 4.4 |
total | 916 | 100 | 383 | 100 |
Table 8 note 1: Data not reported for 15 women for all screen positive pregnancies.
Table 8 note 2: Data not reported for 3 women requiring treatment in pregnancy.
Of the women born outside the UK, 9.9% arrived during pregnancy and a further 11.3% arrived in the year before conception. A higher percentage of women who required treatment arrived during pregnancy (16.7%) and a further 23.2% arrived in the year before conception compared to all women who screened positive for syphilis (Table 9).
Table 9: Timing of arrival in the UK
Timing of arrival | All women with a syphilis screen positive result who were born abroad | Percentage (%) | Women requiring treatment in pregnancy born abroad | Percentage (%) |
---|---|---|---|---|
During pregnancy | 28 | 9.9 | 19 | 17.0 |
Equal to or less than 1 year before conception | 32 | 11.3 | 26 | 23.2 |
1 to 5 years before conception | 105 | 37.1 | 43 | 38.4 |
More than 5 years before conception | 118 | 41.7 | 24 | 21.4 |
total | 283 | 100 | 112 | 100 |
Table 9 note 1: Data not reported for 206 women for all women born abroad.
Table 9 note 2: Data not reported for 81 women born abroad and requiring treatment in pregnancy.
6.3 Social circumstances
Social complicating issues were reported for 29.1% of screen positive pregnancies (271 of 931) with multiple issues reported for 133. A higher proportion of women where treatment was required had socially complicating issues reported (33.9%, 131 of 386 women). A breakdown of the socially complicating issues is shown in Table 10b. The most commonly reported issues were social services involvement and mental health issues. Social service involvement was reported for 64.1% of women with drug or alcohol misuse, 59.4% of women with housing concerns, 56.6% of women experiencing issues with engaging with healthcare services and 42.7% of women with mental health issues. Overall, social issues are likely to be underreported and only represent those known to healthcare professionals and/or disclosed by women during pregnancy.
Table 10a: Socially complicating issues
Issue | All women with a syphilis screen positive result | Percentage (%) | Women requiring treatment in pregnancy | Percentage (%) |
---|---|---|---|---|
None | 660 | 70.9 | 255 | 65.1 |
At least one social issue | 271 | 29.1 | 131 | 33.9 |
Total | 931 | 100 | 386 | 100 |
Table 10b: Social complicating issues
Social Issue | All women with a syphilis screen positive result | Percentage (%) | Women requiring treatment in pregnancy | Percentage (%) |
---|---|---|---|---|
Mental health issues | 117 | 12.6 | 52 | 13.5 |
Social services involvement | 122 | 13.1 | 58 | 15.0 |
Housing concerns | 69 | 7.4 | 46 | 11.9 |
Intimate partner violence | 53 | 5.7 | 26 | 6.7 |
Drug or alcohol misuse | 64 | 6.9 | 32 | 8.3 |
Immigration problems | 12 | 1.3 | 9 | 2.3 |
Prison | 10 | 1.1 | 7 | 1.8 |
Sex work | 8 | 0.9 | 5 | 1.3 |
Learning difficulties | 13 | 1.4 | 7 | 1.8 |
Issues engaging with healthcare services | 54 | 5.8 | 34 | 8.8 |
Financial | 12 | 1.3 | 8 | 2.1 |
Other | 18 | 1.9 | 4 | 1.0 |
Table 10b note 1: Other includes known or suspected FGM (7), other type of family abuse (3), police involvement (2).
Over half of women were reported as being employed (51.3%, 442 of 861 women). A quarter of women were reported as unemployed and a fifth were homemakers. (Table 11).
Table 11: Employment status of women
Employment status | All women with a syphilis screen positive result | Percentage (%) | Women requiring treatment in pregnancy | Percentage (%) | |
---|---|---|---|---|---|
Employed (full or part-time) | 442 | 51.3 | 182 | 50.3 | |
Home | 170 | 19.7 | 60 | 16.6 | |
Student | 20 | 2.3 | 9 | 2.5 | |
Sick | 9 | 1.1 | 5 | 1.4 | |
Unemployed | 220 | 25.6 | 106 | 29.3 | |
Total | 861 | 100 | 362 | 100 |
Table 11 note 1: data not reported for 70 women for all screen positive pregnancies.
Table 11 note 2: data not reported for 18 women where treatment was required in pregnancy.
Table 11 note 3: total proportion of pregnancies not equal to 100 due to rounding.
For three-quarters of women, their main support during pregnancy was a cohabiting partner; 11.9% of women’s main support was a non-cohabiting partner and 7.7% of women’s main support was a family member or a friend (Table 12).
Table 12: Main support in pregnancy
Main support | All women with a syphilis screen positive result | Percentage (%) | Women requiring treatment in pregnancy | Percentage (%) |
---|---|---|---|---|
Partner (cohabiting) | 664 | 75.9 | 254 | 69.6 |
Partner (not cohabiting) | 104 | 11.9 | 54 | 14.8 |
Family/friend | 67 | 7.7 | 35 | 9.6 |
Other | 7 | 0.8 | 5 | 1.4 |
None | 33 | 3.7 | 17 | 4.7 |
total | 875 | 100 | 365 | 100 |
Table 12 note 1: data not reported for 107 women for all screen positive pregnancies.
Table 12 note 2: data not reported for 21 women where treatment was required in pregnancy.
Table 12 note 3: total proportion of pregnancies not equal to 100 due to rounding.
For those women who reported having a partner during pregnancy, over 80% of their partners were employed. Over 15% of partners were reported to be unemployed.
Table 13: Partner’s employment status
Partner’s employment status | All women with a syphilis screen positive result | Percentage (%) | Women requiring treatment in pregnancy | Percentage (%) |
---|---|---|---|---|
Employed (full or part-time) | 602 | 82.8 | 243 | 83.2 |
Home | 5 | 0.7 | 2 | 0.7 |
Student | 2 | 0.3 | 1 | 0.3 |
Sick | 4 | 0.6 | 3 | 1.0 |
Unemployed | 114 | 15.7 | 43 | 14.7 |
total | 727 | 100.1 | 292 | 100 |
Table 13 note 1: data not reported for 41 pregnancies for all screen positive pregnancies.
Table 13 note 2: data not reported for 16 pregnancies where treatment was required in pregnancy.
Table 13 note 3: total proportion of pregnancies not equal to 100 due to rounding.
6.4 Language
English was spoken by 80.9% of women (752 of 930). Of those who spoke English, it was the first language for 63.4% (476 of 751).
Translation services were required for 20.9% of women (195 of 931). Of women requiring translation services 96.2% (180 of 187) received translation through formal interpretation services (Table 14). Since 2023 ISOSS has requested information on language translated and will include this in future reports.
Table 14: Translation services
Translation services | All women with a syphilis screen positive result | Percentage (%) | Women requiring treatment in pregnancy | Percentage (%) |
---|---|---|---|---|
Independent person (phone or present) | 180 | 96.3 | 87 | 95.6 |
No (declined) | 1 | 0.5 | 0 | 0.0 |
No (interpreter not available) | 1 | 0.5 | 1 | 1.1 |
Family or friend | 5 | 2.7 | 3 | 3.3 |
Total | 187 | 100 | 91 | 100 |
Table 14 note 1: Receipt of translation services by women requiring these was missing for 8 pregnancies.
6.5 Previous pregnancies
ISOSS data collection forms were updated in 2022 to more accurately capture obstetric history. Completeness of reporting improved this year and breakdowns are summarised in Table 15. Overall 31.1% of pregnancies were to women in their first pregnancy (279 of 896).
Table 15: Previous registerable births
All women with a syphilis screen positive result | Percentage | Women requiring treatment in pregnancy | Percentage | |
---|---|---|---|---|
0 | 279 | 31.1 | 161 | 43.6 |
1 | 286 | 31.9 | 107 | 29.0 |
2 or more | 331 | 36.9 | 101 | 27.4 |
total | 896 | 99.9 | 369 | 100 |
Table 15 note 1: Obstetric live/stillbirth history was not known for 35 pregnancies.
7. Screen positive pathway
7.1 Screening team appointment
In 90.9% (846 of 931) of pregnancies, women had an appointment (in person or virtually by phone) with the screening team within 10 working days to discuss their screen positive result, an increase from 2020 when it was 84.7% of pregnancies. 13 women (1.4%) were seen more than 20 working days after their screen positive result was returned to maternity services and 30 (3.2%) were not seen by the screening team at all, (Table 16). Where women were not seen within the 10 working days standard, the most commonly reported reasons included:
- women did not attend (DNA) or did not engage with healthcare services (50)
- a delay in the lab communicating results to screening team (8)
- women requested to be seen the same time as their dating scan which fell just outside of the 10 day timeframe (5)
- appointment/staff availability (4)
-
women unable to attend due to childcare/work commitments (3)
- a delay in results being acted on by the screening team (3)
For some women there was more than 1 reason why the appointment was delayed. During the COVID pandemic, national guidance was issued to providers that results could be given to women virtually rather than face-to-face within 10 days. Some respondents reported that they did not meet the 10 day standard despite having met the standard by holding a virtual appointment with the woman, in line with the updated guidance. ISOSS now collect whether the appointment was in person or virtual via phone and this will be reported in future reports.
Table 16: Days to screening team appointment from date of screen positive result
Time to being seen | Number of syphilis screen positive pregnancies | Percentage of pregnancies (%) | Women requiring treatment in pregnancy | Percentage of pregnancies (%) |
---|---|---|---|---|
0-10 working days | 846 | 90.9 | 349 | 90.4 |
11-20 working days | 26 | 2.8 | 11 | 2.9 |
Greater than 20 working dates | 13 | 1.4 | 5 | 1.3 |
Greater than 10 days (timing unclear) | 16 | 1.7 | 9 | 2.3 |
Not seen | 30 | 3.2 | 12 | 3.1 |
total | 931 | 100 | 386 | 100 |
7.2 Timing of screen positive result
Women received their screen positive result by 13 weeks gestation in 67.3% of pregnancies (627 of 931) (Table 17). This was an increase on the 58.6% of women receiving their result in the first trimester in 2020. Among the 109 women (11.7%) who screened positive after 20 weeks gestation, 10 were unbooked and presented in labour. A higher proportion of women requiring treatment booked after 20 weeks gestation (16.6% vs 11.7% for the screen positive population overall).
Table 17: Gestation of first screen positive result in pregnancy
All women with a syphilis screen positive result | Percentage (%) | Women requiring treatment in pregnancy | Percentage (%) | |
---|---|---|---|---|
Less than 10+0 weeks | 308 | 33.1 | 117 | 30.3 |
10+0-12+6 weeks | 319 | 34.3 | 132 | 34.2 |
13+0-19+6 weeks | 195 | 20.9 | 73 | 18.9 |
20+0-29+6 weeks | 64 | 6.9 | 39 | 10.1 |
30+0 weeks or more | 45 | 4.8 | 25 | 6.5 |
total | 931 | 100.0 | 386 | 100 |
7.3 Referral to sexual health
The IDPS programme screen positive pathway states 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 95.5% (889 of 931) of women (Table 18). This was higher than the 89.7% reported to be referred in 2020. For the 42 women reported as not referred to sexual health, reasons included:
- 27 were already under the care of sexual health
- results for 8 were discussed with a sexual health service or equivalent, who determined no further treatment was necessary
- 1 declined being referred to sexual health services
- 1 had a miscarriage and moved area and was advised to seek follow up locally
- 1 arrived in labour unbooked and was seen and treated by sexual health postnatally
- 1 referral was not actioned in pregnancy by the screening team and actioned after delivery (treatment not required)
- 1 assessed as not requiring referral to sexual health by infectious diseases/screening midwife (also assessed no treatment required)
- for 2 pregnancies, it was unclear whether discussion with sexual health services had taken place to establish whether treatment was required (both reported as not requiring treatment)
Of the 889 women referred to sexual health services, date of appointment was provided for 719 women. Sexual health services are often not a part of 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. In other pregnancies women were already under the care of sexual health services.
Of the women referred to sexual health services, 45.8% (329 of 719) were seen within 2 weeks (Table 19), a decrease from the 57.4% seen within this timeframe in 2020. Overall, 12.1% (87 of 719) were not seen until after 6 weeks from the date of first screen positive result; this was 8.2% for women requiring treatment. The most commonly reported reasons for 6 week or longer delays in being seen included:
- women not attending appointments/not engaging with services (18)
- delay in being seen by the screening team (12)
- transferring care (4)
- issues with laboratory reporting (3)
- delayed referral to sexual health by the screening team (2)
Table 18: Referral to sexual health services
Referral | All women with a syphilis screen positive result | Percentage (%) | Women requiring treatment in pregnancy | Percentage (%) | |
---|---|---|---|---|---|
Yes | 889 | 95.5 | 376 | 97.4 | |
No | 42 | 4.5 | 10 | 2.6 | |
total | 931 | 100 | 386 | 100 |
Table 19: Time to being seen by sexual health services from first positive result
All women with a syphilis screen positive result | Percentage (%) | Women requiring treatment in pregnancy | Percentage (%) | |
---|---|---|---|---|
Less than 2 weeks | 329 | 45.8 | 170 | 48.0 |
2 to 4 weeks | 222 | 30.9 | 121 | 34.2 |
4 to 6 weeks | 81 | 11.3 | 35 | 9.9 |
More than 6 weeks | 87 | 12.1 | 28 | 7.9 |
total | 719 | 100.1 | 354 | 100 |
Table 19 note 1: Data not reported for 169 women for all screen positive pregnancies.
Table 19 note 2: data not reported for reported for 22 women where treatment was required in pregnancy.
Table 19 note 3: total proportion of pregnancies not equal to 100 due to rounding.
8. Women requiring treatment
This section of the report focuses on the 386 (41.3%) women who screened positive and required treatment for syphilis during pregnancy.
Among women requiring treatment, 89.6% (346) received treatment in pregnancy. There were 40 women who required treatment who did not receive it during pregnancy. This includes:
- 9 women who presented to services unbooked and were screened in labour
- 11 women who miscarried before referral was actioned
- 5 women who declined treatment
- 4 women who disengaged with care
- 4 women who booked late and delivered before the referral could be actioned
- 3 women who had a termination before referral was actioned
- 2 women who were lost to follow up
- 2 women who were known to have gone abroad before referral was actioned
8.1 Time to treatment
Over a third of women (126 of 345) were treated by 13 weeks of pregnancy, with over a fifth (80 of 345) not receiving treatment until after 20 weeks gestation (Table 20). As previously discussed, this reflects the number of women booking late in their pregnancies. This included 25 women who booked at 13-19 weeks and 35 women who booked and were screened after 20 weeks gestation.
Less than half of women, 43.8% (151 of 345) were treated within 2 weeks of their first positive result in pregnancy, and 13.9% (48 women) were treated more than 6 weeks after their first positive result, Table 21. For one woman timing of treatment was unclear. The maximum time to treatment was 172 days, where there were issues with engagement with health care services.
Of the 48 women treated more than 6 weeks after the date that the screen positive result was received, reasons included:
- 10 women not engaging with health care services
- 7 women were referred to allergy services (and in some cases required desensitization treatment)
-
7 pregnancies where there was a delay to referral to sexual health services (systems errors)
- 4 pregnancies where sexual health services were establishing whether treatment was required
- 4 women who transferred care, or moved/travelled during pregnancy
- 1 woman who was in prison during pregnancy
- 15 pregnancies the reason for late treatment was unclear
Of the 48 women treated after 6 weeks, 42 were confirmed to have completed treatment by delivery, 2 missed appointments and 4 were not known
Table 20: Gestation at first treatment
Gestation | Number of pregnancies | Percentage (%) |
---|---|---|
Less than or equal to 13 weeks | 126 | 36.5 |
13 to 20 weeks | 139 | 40.3 |
More than 20 weeks | 80 | 23.2 |
total | 345 | 100 |
Table 21: Time to treatment from date of first positive result
Time | Number of pregnancies | Percentage (%) |
---|---|---|
Less than or equal to 2 weeks | 151 | 43.8 |
2 to 4 weeks | 109 | 31.6 |
4 to 6 weeks | 37 | 10.7 |
More than 6 weeks | 48 | 13.9 |
total | 345 | 100 |
8.2 Penicillin allergy
Among women who required treatment, 5.4% (21 of 386) had a penicillin allergy reported, and 19 of 21 were referred to allergy services. Of the two women not referred, one was not engaging with services, the second was an unconfirmed allergy.
8.3 Treatment summary
The majority of women who were treated received benzathine penicillin (341 of 346, 98.6%) in line with British Association of Sexual Health and HIV (BASHH) guidance (Table 22 and Figure 3). Of the four women treated with ceftriaxone and doxycycline, two had confirmed penicillin allergies.
Figure 3: treatment summary among women treated for syphilis in pregnancy booked in 2021-22
Table 22: Treatment summary
Treatment | Number of pregnancies | Percentage |
---|---|---|
Benzathine penicillin | 341 | 98.6 |
Ceftriaxone | 2 | 0.6 |
Doxycycline | 2 | 0.6 |
Not specified | 1 | 0.3 |
total | 346 | 100 |
Table 22 note 1: Treatment not given to 40 women during pregnancy who were identified as requiring treatment.
Retreatment in pregnancy
There were 17 women (4.9%) who were retreated in pregnancy. Reasons for retreatment were:
- 9 women had no reduction in serology result for rapid plasma reagin (RPR)
- 4 women were thought to have been reinfected
- 3 women did not complete their initial treatment plan and had to restart treatment later in pregnancy
- 1 woman was initially treated with azithromycin pending allergy testing then received benzathine penicillin
Completion of treatment
In 2021 ISOSS began collecting whether treatment was completed as planned prior to delivery. This information was available for 243 of 313 women who delivered, among these 96.7% completed treatment as planned (235 of 243).
Of the 8 women who did not complete treatment as planned:
- 4 missed appointments
- 2 had preterm delivery before final dose of treatment
- 1 restarted treatment (due to missed appointments) and delivered before the final dose could be administered
- 1 woman had complex medical needs in pregnancy that affected ability to complete treatment
8.4 Clinical presentation
Of the women requiring treatment, 3.9% (15 of 386) had or reported symptoms when seen in sexual health services. Some women presented with more than 1 symptom. The most commonly reported symptoms were:
- 5 women with skin rash or macules
- 4 women with genital sores, chancre or ulcers
- 2 women with unusual vaginal discharge
Eight women who presented with symptoms were referred to sexual health services as a result of IDPS screening, 2 previously screened negative in pregnancy and were diagnosed later in pregnancy in sexual health services with syphilis following symptoms, 1 self-referred to sexual health services prior to initial screening in pregnancy and 1 woman was unbooked in labour and presented with multiple symptoms. No further details were available in the remaining pregnancies.
8.5 Women screened in labour
There were 9 women who delivered unbooked, who screened positive for syphilis in labour and required treatment:
- 2 were known to have subsequently completed treatment
- 1 subsequently commenced treatment but did not complete the course
- 4 did not attend sexual health services appointments and so were not treated
- 2 unclear whether referred to sexual health and/or treated postnatally
6 of the 9 infants received IV benzyl penicillin after birth and 2 were not treated as they were RPR negative at birth, and 1 was a stillbirth. 2 infants were reported as having congenital syphilis. Seven women were known to be referred to sexual health services postnatally.
9. Pregnancy outcomes
ISOSS pregnancy outcomes are sought for all pregnancies where the woman required treatment for syphilis in pregnancy. Of the 386 pregnancies to women requiring treatment, 332 resulted in the registerable births of 340 infants. Of these, there were 4 stillbirths (1.2%) and 336 live births. There were 24 miscarriages (6.3% of pregnancies) and 10 terminations of pregnancy reported; reasons for termination are not collected. A full breakdown is shown in Table 23 and Figure 4.
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 where 1 or more of the 3 screened for infections was present. The collaboration has confirmed that for 2021-22 there were no additional neonatal deaths and stillbirths reported to MBRRACE that ISOSS were unaware of.
Of the registrable births to women treated for syphilis in pregnancy, 63.0% delivered vaginally, 14.2% delivered by elective caesarean and 22.7% by emergency caesarean, see Table 24.
The preterm delivery rate was 12.3% (Table 25), and the proportion of infants born with a low birthweight (1.5 to 2.5kg) was 12.9% and 1.8% were born with a very low birthweight (less than 1.5kg) (Table 26).
Table 23: Outcome per pregnancy
Outcome | Number of pregnancies | Percentage of pregnancies |
---|---|---|
Livebirth | 328 | 86.5 |
Miscarriage | 24 | 6.3 |
Termination of pregnancy | 10 | 2.6 |
Stillbirth | 4 | 1.1 |
Gone abroad | 9 | 2.4 |
Lost to follow up | 4 | 1.01 |
total | 379 | 100 |
Table 23 note 1: data not reported for 7 pregnancies.
Table 23 note 2: data reported per pregnancy not per infant born, meaning multiple births were counted once. There were no discordant outcomes for multiple births.
Table 23 note 3: total proportion of pregnancies not equal to 100 due to rounding.
Figure 4: Outcomes to pregnancies where women required treatment for syphilis
Table 24: Mode of delivery per pregnancy
Mode of delivery | Number of pregnancies where women treated for syphilis in pregnancy | Percentage of pregnancies where women treated for syphilis in pregnancy (%) | Percentage of births in general population (England 2020-2021) |
---|---|---|---|
Vaginal | 208 | 63.0 | 62.6 |
Elective caesarean section | 47 | 14.2 | 15.5 |
Emergency caesarean section | 75 | 22.7 | 19.7 |
total | 330 | 99.9 | NA |
Table 24 note 1: Figures in table 24 are for pregnancies resulting in a registerable birth (livebirth and stillbirth).
Table 24 note 2: data reported per pregnancy not per infant born, meaning multiple births were counted once.
Table 24 note 3: data not reported for 2 pregnancies.
Table 24 note 4: total proportion of pregnancies not equal to 100 due to rounding.
Table 25: Gestation at delivery (for livebirths and stillbirths per infant)
Gestation | Number of births | Percentage of births (%) | Percentage of births in general population (England 2021-2022) |
---|---|---|---|
Equal to or more than 37 weeks | 291 | 87.7 | 91.8 |
Less than 37 weeks | 41 | 12.3 | 8.3 |
total | 332 | 100 | NA |
Table 25 note 1: data reported per infant born not per pregnancy, meaning multiple pregnancies are reported more than once.
Table 26: Birthweight at delivery (for livebirths only)
Birthweight | Number of infants | Percentage of infants (%) | Percentage of births in general population (England 2021-2022) |
---|---|---|---|
Equal to or more than 2.5kg | 285 | 85.3 | 94.1 |
1.5-2.5kg | 43 | 12.9 | 5.0 |
Less than 1.5kg | 6 | 1.8 | 0.9 |
total | 334 | 100 | NA |
Table 26 note 1: data reported per liveborn infant not per pregnancy, meaning multiple pregnancies are reported more than once.
Table 26 note 2: data not reported for 2 infants.
9.1 Syphilis birth plan use
A birth plan outlining clinical care requirements for the infant at birth and postnatally was in place for 317 of 336 deliveries (94.4%), (Table 27). The BASHH syphilis birth plan was used in two-thirds of deliveries (222 of 336) while 28.3% used an alternative local or other birth plan (95 of 336). For 19 infants, no birth plan was used.
Reasons for not using a birth plan included:
- 8 were women who were screened in labour
- 5 were late transfers of care (includes a multiple pregnancy)
- 1 woman missed her sexual health appointments
- 1 woman presented late and delivered preterm before the birth plan was completed
- 2 reasons unclear
- 2 providers reported that a birthplan was not required
Table 27: Birth plan use per pregnancy (for livebirths and stillbirths)
Birth plan use | Number of pregnancies | Percentage (%) |
---|---|---|
No | 19 | 5.7 |
Yes, BASHH syphilis birth plan | 222 | 66.1 |
Yes, local or other birth plan | 95 | 28.3 |
total | 336 | 100 |
Table 27 note 1: total proportion of pregnancies not equal to 100 due to rounding.
9.2 Infant outcomes
Of the 336 live infants, 13.1% (44 of 336) infants were admitted to the neonatal unit (Table 28). Commonly reported reasons for admission included:
- prematurity (22)
- breathing difficulties (19)
- suspected or confirmed sepsis (7)
- neonatal abstinence syndrome (3
- congenital syphilis (2)
There were 4 infants with confirmed congenital syphilis born to women with screen positive results who required treatment (1 was a stillbirth). Of these, two woman presented unbooked in labour having received no antenatal care in England, with screening results returned after delivery and 1 woman disengaged with health care services during pregnancy with no treatment received. There were additional reports of one infant with probable congenital syphilis and two infants with possible congenital syphilis (see ‘Clinical expert review panel: congenital syphilis review’ section for definitions).
Overall, other congenital conditions were reported in 1.8% (6 of 334) of infants and among these, 1 had multiple conditions reported (Table 29).
Table 28: Neonatal unit admission
Neonatal unit admission | Number of infants | Percentage of infants (%) |
---|---|---|
No | 292 | 86.9 |
Yes | 44 | 13.1 |
total | 336 | 100 |
Table 29: Congenital conditions for livebirths
Congenital conditions | Number of infants | Percentage of infants (%) |
---|---|---|
None | 328 | 98.2 |
One condition | 5 | 1.5 |
Multiple conditions | 1 | 0.3 |
total | 334 | 100 |
Table 29 note 1: data not reported for 2 infants.
10. Paediatric follow up
All infants born to women who require treatment for syphilis in pregnancy should be followed up as a minimum at 3 months of age, in line with BASHH guidelines. This section focuses on all infants born to women booked for antenatal care in 2021-22 who required treatment in pregnancy. Of the 336 surviving infants born to women requiring treatment, 201 infants had a paediatric follow-up appointment reported; these include the 3 infants with confirmed congenital syphilis and the 3 infants with probable or possible congenital syphilis, with paediatric reports pending for the remaining 135 infants.
All infants born to women requiring treatment for syphilis in pregnancy are followed up. Any confirmed, probable or possible reports of infants with congenital syphilis are reviewed by the clinical expert review panel (CERP). All other infants are followed up until negative RPR at 3 months. Among the 195 infants with no clinical indication or suspicion of congenital syphilis:
- 126 (64.6%) had a negative RPR at ≥3 months of age and were discharged and surveillance ceased
- 43 were discharged based on other test results (40 were negative RPR at 3 months and 3 RPR negative at birth where it is unit policy to discharge based on negative birth RPR)
- 12 were lost-to-follow-up or went abroad before 3 months of age
- 9 infants had initial insufficient results and were still in follow-up at the time of reporting
- 4 were discharged with no tests carried out as sexual health services had advised that no infant follow-up was required (despite woman being treated in pregnancy)
- 1 infant was treated due to concerns about serology and later discharged
10.1 Infant treatment
Among the infants where there was no clinical indication of congenital syphilis, 16.9% (33 of 195) received treatment, an increase on the 14.5% in 2020. Reasons for treatment were:
- 24 infants born to women who received inadequate treatment in pregnancy
- 2 infants born women who had no drop in RPR following treatment in pregnancy
- 3 infants were treated in line with a local policy/guideline (all with 1 day benzyl penicillin)
- 3 were treated as precaution: late treatment in pregnancy (1), missed post-treatment testing appointment (1) and concerns about maternal reinfection in pregnancy (1)
- 1 infant was treated due to a lab error in reporting infants RPR
Twenty-nine of the 33 treated infants received 10 days benzyl penicillin, the 3 infants treated as local policy all received 1 day, and the infant treated in error received 3 days benzyl penicillin. In terms of region, 20 of the 33 infants were born in North East & Yorkshire and the Humber, 4 Midlands, 4 North West, 3 London and 2 East of England.
11. Clinical expert review panel: congenital syphilis review
ISOSS receives and investigates reports of suspected or confirmed congenital syphilis in live births and stillbirths England dating back to 2015.
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, usually starting with the reporting paediatrician, and then expanding 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 ensure as much information is collected as possible.
Anonymised care summaries are produced and are reviewed by the 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 to the IDPS programme to inform national guidelines, policy and IDPS programme projects
Due to the complexities in diagnosing congenital syphilis, clinical members of the CERP collectively developed the following definitions of congenital syphilis. All reports of congenital syphilis reviewed by the CERP are now classified under these 3 groupings.
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 infant)
- Infant displayed no features of probable or confirmed congenital syphilis
Probable case:
Woman had untreated or inadequately treated syphilis at delivery, a reactive RPR in the infant’s serum and at least one of the following in the infant:
- Any evidence of congenital syphilis on physical examination
- Any evidence of congenital syphilis on radiographs of long bones
- A positive cerebrospinal fluid RPR test
- Infant’s RPR titre four-fold or greater than that of their mother (note a lower RPR titre does not exclude the diagnosis)
Confirmed case:
A probable case plus at least one of the following:
- Demonstration of T pallidum by darkfield microscopy or positive PCR test result in sample(s) from the umbilical cord, placenta, neonatal nasal discharge, body fluids or skin lesion material,
OR
- Detection of T pallidum specific IgM
11.1 Overview of all congenital syphilis cases
There were 55 infants (livebirths and stillbirths) with congenital syphilis in England reported to ISOSS from 1 January 2015 to September 2023 and reviewed by the CERP (Table 30). Of these, 39 infants were included in the previous ISOSS syphilis reports, with a further 16 infants reported to ISOSS since January 2022.
Table 30: Number of infants with confirmed congenital syphilis in England by calendar year of birth
Year of birth | Confirmed | Probable | Possible | Total | Number of births (live births and still births) in England | Rate per 1000 births |
---|---|---|---|---|---|---|
2015 | 1 | 1 | 667,351 | 0.002 | ||
2016 | 5 | 5 | 666,052 | 0.008 | ||
2017 | 6 | 6 | 649,473 | 0.008 | ||
2018 | 3 | 3 | 628,171 | 0.005 | ||
2019 | 11 | 11 | 612,851 | 0.018 | ||
2020 | 7 | 1 | 8 | 585,195 | 0.013 | |
2021 | 10 | 1 | 11 | 595,948 | 0.018 | |
2022 | 6 | 2 | 8 | 577,046 | 0.014 | |
2023 | 2 | 2 | ||||
total | 51 | 2 | 2 | 55 |
Table 30 note 1: Numbers are expected to increase for most recent years.
Table 30 note 2: This table includes all reported infants with congenital syphilis by year of birth, as reviewed by the CERP by June 2023. Paediatric outcomes section of this report discusses infants born to women booked in 2021, meaning a difference in the reported number discussed.
Office for National Statistics (ONS) data was used for number of births per calendar year.
Figure 5: infants with confirmed, probable and possible congenital syphilis born in England 2015-23 by timing of maternal diagnosis, Figure 5 note 1: 2022-2023 numbers are incomplete and expected to increase.
11.2 Demographics
Among the 16 reports of congenital syphilis received since the beginning of 2022, the maternal ethnic origin was White British (11), White Other (4) and Black African (1). Three-quarters infants (12 of 16) were born to women who were born in the UK and 4 to women born abroad (Romania, Bulgaria and Portugal). All those who required translation services received them. Median maternal age was 28 years (IQR: 25 to 30 years).
Complicating social circumstances at the time of pregnancy were reported in 9 of the 16 recently reviewed reports, with many women experiencing multiple issues (Table 31).
Table 31: Complicating social circumstance issues experienced by women
Complicating issues reported | Number of women reported to ISOSS since January 2022 | Cumulative number of women for all reported CS reports since 2015 |
---|---|---|
Any issue reported | 9 | 29 |
Safeguarding / social services involvement | 6 | 20 |
Foster care / adoption | 2 | 10 |
Mental health issues | 4 | 11 |
Drug / alcohol misuse | 5 | 11 |
Insecure housing | 7 | 16 |
Intimate partner violence | 3 | 10 |
Sex work | 2 | 5 |
Issues engaging with healthcare services | 6 | 12 |
Immigration | 2 | 2 |
Table 31, note 1: Issues overlap so may appear as 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 newly reported infants | Percentage of infants (%) | Cumulative number of infants since 2015 | Percentage of cases (%) |
---|---|---|---|---|
London | 3 | 18.8 | 9 | 16.4 |
North East, Yorkshire and Humber | 5 | 31.3 | 14 | 25.5 |
North West | 3 | 18.8 | 12 | 21.8 |
Midlands | 0 | - | 3 | 5.5 |
East of England | 2 | 12.5 | 6 | 10.9 |
South West | 0 | - | 0 | - |
South East | 3 | 18.8 | 11 | 20.0 |
total | 16 | 100.2 | 55 | 100 |
Table 32 note 1: total proportion of pregnancies not equal to 100 due to rounding.
Table 33: Timing of woman’s diagnosis:
Timing of woman’s diagnosis | Number of newly reported infants | Percentage of infants (%) | Cumulative number of infants since 2015 | Percentage of infants (%) |
---|---|---|---|---|
Diagnosed antenatally (screening or other referral) | 8 | 50.0 | 20 | 36.4 |
Diagnosed postnatally | 8 | 50.0 | 35 | 63.6 |
total | 16 | 100 | 55 | 100 |
Table 33 note 1: the diagnosed postnatally group includes 5 women who did not access antenatal care and were screened in labour, and 2 women who declined screening earlier in pregnancy and accepted at delivery.
Table 34: Number of previous livebirths:
Previous livebirths | Number of women | Percentage of women (%) |
---|---|---|
0 | 5 | 31.3 |
1 | 7 | 43.8 |
2 or more | 4 | 25.0 |
total | 16 | 100 |
Table 34 note 1: total proportion of pregnancies not equal to 100 due to rounding.
11.3 Contributing factors
Of the 16 infants reported since January 2022, all women were offered screening either in pregnancy or at the time of delivery where antenatal care was not accessed. Two women declined the initial screening at antenatal booking owing to needle phobia and accepted at delivery when cannulation was required.
11.4 Women who screened positive in pregnancy
Thirteen women had a confirmed screen positive antenatal screening result. Of these 13, 3 women presented unbooked in labour having not accessed antenatal care and 2 women initially declined screening (see above). The two women who declined having bloods taken earlier in pregnancy accepted at delivery whilst being canulated. These 5 women all accepted screening in labour and the results were returned postnatally.
Of the remaining 8 women who screened positive antenatally:
- One woman with a reported penicillin allergy (not confirmed) was incorrectly treated with a macrolide.
- Three women booked late for antenatal care (19-31 weeks) and delivered before treatment was completed and/or had maximum impact on the infection. Two of these women preterm (less than 37weeks)
- One woman was booked and screened positive at less than10 weeks, the screening team were initially not informed of the result, the woman DNA’d sexual health services appointments delivered prematurely before treatment was started.
-
In one sexual health services incorrectly advised that the woman did not require treatment.
- In one there was a missed screening result (reported as a screening incident), she was referred to sexual health services postnatally.
- The remaining case was a possible case where there was unclear maternal and infant serology and the baby was treated with benzyl penicillin.
11.5 Women who screened positive postnatally
Three of the 16 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
- One was diagnosed following their infant’s symptomatic diagnosis
- One was diagnosed as part of testing following a stillbirth
- One was diagnosed following their partner’s diagnosis, but did not report this to healthcare professionals during pregnancy, attending sexual health services post-delivery with concerns
11.6 Infant outcomes
There were 13 livebirths and 3 stillbirths. Of the 16 infants, half were delivered preterm (less than 37 weeks), half were vaginal deliveries and half were emergency caesareans. Ten of the infants presented with clinical symptoms. These included hepatosplenomegaly, thrombocytopenia, peeling skin, rashes and skin lesions. The majority of the infants were diagnosed at under 1 month of age (Table 38).
Table 35: infant outcomes
Infant outcome | Number of infants | Percentage of infants (%) | Cumulative number if infants since 2015 | Percentage of infants (%) |
---|---|---|---|---|
Livebirth | 13 | 81.3 | 48 | 87.3 |
Stillbirth | 3 | 18.8 | 7 | 12.7 |
total | 16 | 100 | 55 | 100 |
Table 35 note 1: livebirths includes 3 neonatal deaths.
Table 35 note 2: total proportion of pregnancies not equal to 100 due to rounding.
Table 36: Gestation at delivery
Gestation at delivery | Number of infants | Percentage of infants (%) | Cumulative number of infants since 2015 | Percentage of infants (%) |
---|---|---|---|---|
Less than 37 weeks | 8 | 50.0 | 27 | 49.1 |
37 weeks or more | 8 | 50.0 | 28 | 50.9 |
total | 16 | 100 | 55 | 100 |
Table 36 note 1: less than 37 weeks includes 3 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 | 0 | - |
Emergency caesarean | 8 | 50.0 |
Vaginal delivery* | 8 | 50.0 |
Total | 16 | 100.0 |
Table 37 note 1: vaginal delivery includes 3 stillbirths.
Table 38: Age at diagnosis among confirmed cases
Age at diagnosis | Number of infants | Percentage of infants (%) |
---|---|---|
Less than 1 month | 7 | 77.8 |
1 to 6 months | 2 | 22.2 |
6 to 12 months | 0 | - |
Greater than 12 months | 0 | - |
total | 9 | 100.0 |
Table 38 note: excludes 3 stillbirths and 4 possible/probably cases.
12. Summary and next steps
Since ISOSS maternity syphilis surveillance started in 2020, the number of women who screened positive for syphilis has remained stable at around 900 pregnancies each year.
Among women who screened positive for syphilis in pregnancy who booked in 2021-22, 70% of women were of white ethnicity, 47% were UK born, and a 25% were from Eastern Europe. Among all screen positive pregnancies, there were adverse social circumstances reported in a third and translation services were required in over fifth; these issues were more common among pregnancies resulting in a congenital syphilis diagnosis in the infant.
In 2021-22, 41.3% of pregnancies were to women who required treatment for syphilis. The majority of women were treated with benzathine penicillin or an appropriate alternative during pregnancy. The 2022 ISOSS report highlighted incorrect use of macrolides in pregnancy in a handful of cases; reassuringly in bookings in 2021-22 there are no reports of macrolides as a standalone treatment for syphilis in pregnancy. Where women required but did not receive treatment, issues included booking late in pregnancy or presenting in labour, declining treatment and problems with engaging with health care services.
The incidence of congenital syphilis in England of 0.014 per 1,000 live births in 2022 remains below the WHO elimination threshold of less than 0.5 per 1,000 live births, however there has been a small increase in congenital syphilis cases since 2015 when reports to ISOSS started. Among the small number of transmissions occurring in England, late booking or not receiving any antenatal care remain significant contributing factors. In a small number of cases issues with clinical management also played a role.
The known poor birth outcomes associated with congenital syphilis continue to be seen through CERP reviews, including several stillbirths, high preterm delivery rate, and congenital conditions. The new collaboration between ISOSS and MBBRACE will strengthen understanding of perinatal, neonatal and maternal mortality outcomes.
Paediatric syphilis surveillance of babies born to women requiring treatment for syphilis in pregnancy continues to show variation in follow-up practices, especially surrounding infant testing schedules and interpretation of national guidelines. The BASHH syphilis in pregnancy guidelines and birthplan are currently being updated. The proportion of infants receiving treatment has increased compared to 2020. This was mostly due to concerns around inadequate maternal treatment.
ISOSS continues to provide high-quality population-level data on syphilis in pregnancy and children in England for NHS England’s IDPS programme, supporting wider initiatives to address public health concerns about the rising numbers of syphilis in the general population. Alongside producing core metrics and monitoring clinical pathways, ISOSS will continue to track changing demographics and potential barriers to care to further support national guidelines and NHS England work on inequalities.
By working closely with valued maternity and paediatric respondents across the country, ISOSS provides high quality and timely data to inform guidelines and the national screening programme.
13. Background
13.1 Data collection processes
ISOSS HIV surveillance has been running for over 30 years, syphilis surveillance commenced in 2020 and hepatitis B in 2021. Figure 6 shows the timeline of data collection by ISOSS during pregnancy and after the baby is born. There are 6 data collection points.
13.2 Data validation
The team who deliver ISOSS 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 are checked at each stage and queried directly with respondents where inconsistencies are identified, or data are missing.
13.3 Reporting timeline
Figure 6. Reporting timeline for ISOSS data collection for women during pregnancy and infants after birth
-
Green Card reporting (from approx. 12 wks. 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.
-
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.
-
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.
-
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. *Diagnosed children 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.
-
Paediatric HIV follow up form: generated for all HIV-exposed infants requesting 22-24 month confirmatory antibody test to establish infection status.
-
Paediatric HBV follow up (12 to 13 months after birth): data linkage with UK Health Security Agency’s (UKHSA) Immunisation, Hepatitis and Blood Safety team.
14. Congenital Syphilis Clinical Expert Review Panel members
The Congenital Syphilis CERP members who contributed to the congenital syphilis reviews included in the report (2021-23) 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
Professor Marta Cohen: Consultant Paediatric Pathologist, Head of Department, Clinical Director PDG, Histopathology Department. Sheffield Children’s NHS FT
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 Consultant Microbiologist, UK Health Security Agency
Kate Francis: ISOSS Coordinator, University College London (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 Delma Llewelyn: Senior BMS CWPS University Hospitals Coventry and Warwickshire
Professor Hermione Lyall: Consultant Paediatrician, Infectious Diseases, Professor of Practice, Paediatric Infectious Diseases, Imperial College Healthcare NHS 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
Dr Soonita Oomeer: Integrated Sexual Health Consultant, CNWL – Central and North West London NHS Foundation Trust
Nadia Permalloo: Head of quality assurance development (clinical), Screening Quality Assurance Service, NHS England
Alison Perry: Specialist Screening Midwife, Leeds Teaching Hospitals NHS Trust
Helen Peters: ISOSS Manager, University College London (UCL) Great Ormond Street (GOS) Institute of Child Health
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, University College London (UCL) Great Ormond Street (GOS) Institute of Child Health (CHAIR)
Rebecca Till, Antenatal Pathway Implementation Lead, Vaccinations and Screening Directorate, NHS England
Dr Judith Timms: Clinical Advisor, Laboratory Lead, NHS IDPS programme, NHS England