Research and analysis

Disseminated gonococcal infection in England, 2019 to 2023: data from voluntary reporting

Updated 12 March 2024

Applies to England

This report provides a descriptive analysis of diagnoses of disseminated gonococcal infections in England from January 2019 to June 2023. Data was collected from passive laboratory reporting and voluntary reporting using an enhanced surveillance form collected by the UK Health Security Agency (UKHSA).

Background

Gonorrhoea, caused by the bacterium Neisseria gonorrhoeae (N. gonorrhoeae), is the second-most commonly diagnosed sexually transmitted infection (STI) in England. If untreated, gonorrhoea can lead to complications such as chronic pelvic pain, pelvic inflammatory disease, ectopic pregnancy, infertility and disseminated gonococcal infection (DGI) (1).

DGI is a condition that occurs when N. gonorrhoeae spreads through the bloodstream and causes a variety of systemic signs including polyarthralgia, tenosynovitis, arthritis, and dermatitis (2). It can also result in severe complications, such as joint destruction, endocarditis, meningitis, myositis and osteomyelitis (3). DGI can develop within days or weeks following primary infection with N. gonorrhoeae in a mucosal site (for example, urethra, cervix, rectum or pharynx) (4).

Historically, DGI has been estimated to result from 0.5% to 3% of untreated gonococcal infections (5, 6).

Management of DGI involves treatment with intravenous ceftriaxone and hospitalisation may therefore be required (7).

Until this surveillance was started, there was no data on DGI diagnoses in England. It is currently not a notifiable disease and, as people experiencing symptoms of DGI are more likely to present in healthcare settings other than sexual health services, it is not recorded in the national GUMCAD STI surveillance system. Additionally, the site of infection is a poorly recorded data field in the routine laboratory data submitted through the Second Generation Surveillance System (SGSS), so DGI diagnoses could not be obtained through this data set.

Reported diagnoses of gonorrhoea have more than doubled since 2013, from 37,150 to 82,592 in 2022 (8). With increasing gonorrhoea diagnoses, a concurrent rise in the number of DGI cases is likely, as has already been reported in North America and Australia (5 to 10). Given the potential severity of this complication, UKHSA established a surveillance system for DGI in England to monitor the number of diagnoses, assess trends and capture the demographic and clinical characteristics of cases; this will inform future diagnosis, management, and prevention of DGI.

Data sources

Case definition

Individuals with culture-positive or polymerase chain reaction (PCR)-positive N. gonorrhoeae at a sterile site were classified as confirmed cases. Probable cases were defined as individuals with culture-positive or nucleic acid amplification test-positive N. gonorrhoeae from a non-sterile site with clinical manifestations (for example, tenosynovitis or polyarthralgia) of DGI.

Laboratory reporting

A letter was sent to all diagnostic laboratories in England requesting that all N. gonorrhoeae isolates from sterile sites – such as joint fluid, blood culture – were referred to the UKHSA STI Reference laboratory (STIRL) for confirmation of identification. Antimicrobial susceptibility testing is carried out on confirmed N. gonorrhoeae isolates at the STIRL using the gradient strip method and EUCAST breakpoints.

Additionally, diagnostic laboratories often refer culture-negative specimens from sterile sites for 16s rDNA sequencing at UKHSA through the bacterial identification section of the antimicrobial resistance and healthcare associated infections (AMRHAI) reference unit. N. gonorrhoeae identified by 16s rDNA sequencing is confirmed by the STIRL by N. gonorrhoeae specific PCR. When N. gonorrhoeae is identified, cases are followed up to request additional information via the enhanced surveillance form.

Enhanced surveillance reporting

A secure electronic enhanced surveillance form was set up by UKHSA in June 2020 to standardise information collected about cases of DGI and to provide additional data on individual diagnoses to understand underlying health risks, STI co-infections, and behavioural and demographic characteristics of cases to better inform future public health response.   

This is a passive reporting tool for cases diagnosed prospectively but reporting of retrospective cases of confirmed DGI (within the year prior) was also conducted. A letter was disseminated through the British Association of Sexual Health and HIV (BASHH) requesting clinicians to complete this form for all cases of DGI. Although DGI cases may present to several different healthcare settings, sexual health clinicians usually provide clinical management advice. The form was also sent to clinicians from any health settings where positive DGI specimens have been reported to the STIRL via the aforementioned routes from June 2020 onwards.

The enhanced surveillance form includes patient demographic data (for example, age, gender, ethnicity, sexual orientation, local authority of residence) and patient clinical data (for example, date of diagnosis, site of infection, antimicrobial susceptibility results, clinical symptoms, and treatments provided). The enhanced surveillance form does not collect directly identifiable information such as patient name, date of birth or postcode. This analysis was undertaken for health protection purposes under permissions granted to UKHSA to collect and process surveillance data under Regulation 3 of The Health Service (Control of Patient Information) Regulations 2020 and Section 251 of the National Health Service Act 2006. All analyses were performed on pseudonymised data and all individual-level data were stored securely.

Epidemiology

Demographic characteristics

Between 2019 and June 2023, there was a total of 25 confirmed and 7 probable cases of DGI in England (18 via STIRL and 14 reported directly through the enhanced surveillance form). Enhanced epidemiological data was provided for 17 cases.

Nine cases were diagnosed in 2019, 4 in 2020, 5 in 2021, 9 in 2022 and 5 between January to June 2023.

Both numbers and trends in diagnoses should be interpreted with caution given the likelihood of under-reporting.

The median age of cases was 34 years (interquartile range (IQR) 26 to 43) (see Figure 1). The youngest case was in the 15 to 19 years age range and the oldest was aged over 80 years.

Fifteen (83%) of 17 cases where additional enhanced data was available were men, 8 of whom identified as gay, bisexual or other men who have sex with men (GBMSM), 4 identified as heterosexual or straight and 5 were unknown.

Figure 1. Age-gender distribution of cases of DGI, reported from January 2019 to June 2023, England (n=32)

Ten of the 17 enhanced surveillance cases (59%) were of white ethnicity, 4 cases of other ethnicity and 3 cases of unknown ethnicity.

Half of the reported cases of DGI from both the enhanced surveillance form and laboratory reporting were from the North of England region (n=16), 22% were reported from London (n=7), 16% from the South of England (n=5) and 13% from the Midlands and East of England region (n=4). This geographical distribution may reflect regional differences in the awareness of DGI surveillance, rather than epidemiological differences.

Disease presentation and outcomes

N. gonorrhoeae was identified in joint or synovial fluid in 15 (60%) of all reported confirmed DGI cases. Other sites where N. gonorrhoeae was identified include skin and soft tissue, blood and heart (see Figure 2).

Figure 2. Non-mucosal sites from which N. gonorrhoeae was identified from 2019 to June 2023, England (n=25)

*Unknown refers to specimens where the recorded site was ambiguous.

Ten of the 17 enhanced surveillance cases had confirmed DGI, of which 3 also had N. gonorrhoeae detected in the pharynx. The other 7 did not have concurrent mucosal infection identified.     

Tenosynovitis, polyarthralgia and skin lesions were the most common manifestation of DGI (see Figure 3). Seven cases (41%) were reported to have more than one sign or symptom at time of diagnosis, each reporting between 2 and 4. The most commonly co-diagnosed signs and symptoms were tenosynovitis and skin lesions, which were reported in 3 cases.

Ten (59%) of 17 enhanced surveillance cases were hospitalised for a median of 11 days (IQR 5 to 15). The shortest hospital stay was 4 days and the longest was for 30 days.

Figure 3. Type of signs and symptoms caused by N. gonorrhoeae reported through enhanced surveillance, from 2019 to June 2023, England (n=17)

Treatment and antimicrobial resistance

Among the 17 enhanced surveillance cases, 5 (29%) were ciprofloxacin resistant, 1 of which was also penicillin and tetracycline resistant. All individuals were reported to have been successfully treated with a ceftriaxone regimen. All 13 viable isolates tested via STIRL were susceptible to ceftriaxone with 1 having high level azithromycin resistance (minimum inhibitory concentration (MIC) >256 mg/L). The susceptibility status of the remaining 5 cases confirmed as N. gonorrhoeae in STIRL were not known as they were either non-viable isolates (n=1) or molecular specimens (n=4).

STI co-infections

Four cases were reported to have a concurrent STI (primary, secondary, or early latent syphilis, late latent syphilis, chlamydia or Mycoplasma genitalium) or living with HIV at the time of DGI diagnosis.

Discussion

With over 80,000 gonorrhoea diagnoses reported nationally in 2022 (8), our data likely underestimates the number of cases of DGI in England. As a new passive surveillance system, the low number of cases reported suggests a lack of awareness and engagement by healthcare providers and laboratories rather than a true representation of the number of DGI cases in England. Based on the most conservative estimate of DGI prevalence among gonorrhoea cases from the literature (5, 6), we would expect around 300 cases of DGI per year, compared to 7 per year identified through passive and enhanced surveillance between January 2019 and June 2023.

The rarity of DGI and a general lack of surveillance data limits our ability to identify risk factors for invasive disease. For example, whilst most of the cases reported here were among men, male and female cases were equally common in DGI cases reported in the United States (3 to 5) and Australia (10), countries with a similar distribution of gonorrhoea by gender and sexual orientation as England.

To improve the ascertainment of cases of DGI through public health surveillance, the Department of Health and Social Care (DHSC) is, at the time of publishing this report, undertaking a public consultation on proposed additions to the list of notifiable diseases that includes DGI (11).

Increased awareness of, and engagement with, DGI reporting by all healthcare practitioners would enhance our understanding of the true number of diagnoses and risk factors for invasive gonorrhoea in England. Thereby this would inform any future public health interventions to enable the prevention, timely diagnosis and treatment of DGI.

Implications for DGI surveillance and actions

The implications arising from this report for DGI surveillance and preventive actions are that:

• awareness and vigilance is needed among clinicians and microbiologists to ensure prompt diagnosis and treatment
• testing for N. gonorrhoeae among sexually active patients should be considered in patients with septic arthritis of unknown aetiology
• microbiologists are requested to send N. gonorrhoeae isolates from sterile sites to UKHSA STIRL in Colindale (London)
• further work is needed to understand the barriers to completion and submission of the enhanced surveillance form
• clinicians from any health setting with a confirmed case of DGI should contact UKHSA via grasp.enquiries@ukhsa.gov.uk

References

1. UKHSA (2021). ‘Antimicrobial resistance in Neisseria gonorrhoeae in England and Wales: Key findings from the Gonococcal Resistance to Antimicrobials Surveillance Programme (GRASP 2021)’.

2. Workowski KA, Bachmann LH, Chan PA, and others (2021). Sexually Transmitted Infections Treatment Guidelines, 2021. MMWR Recommendations and Reports: volume 70, number 4, pages 1 to 187.

3. Nettleton, Kent JB, Macomber K, and others (2020). ‘Notes from the field: Ongoing cluster of highly related disseminated gonococcal infections - Southwest Michigan, 2019’. Morbidity and Mortality Weekly Report: volume 69, pages 353 to 354.

4. Jain S, Win H, Chalam V, Yee L, and others (2007). ‘Disseminated gonococcal infection presenting as vasculitis: a case report’. Journal of Clinical Pathology: volume 60, number 1, pages 90 to 91.

5. Tang EC, Johnson KA, Alvarado L, and others (2023). ‘Characterizing the rise of disseminated gonococcal infections in California, July 2020–July 2021’. Clinical Infectious Diseases: volume 76, pages 194 to 200.

6. Belkacem A, Dellion S, and others (2013). ‘Changing patterns of disseminated gonococcal infection in France: cross-sectional data 2009-2011’. Sexually Transmitted Infections: volume 89, number 8, pages 613 to 615.

7. British Association for Sexual Health and HIV (2019). ‘UK national guideline for the management of infection with Neisseria gonorrhoeae’.

8. Public Health England (2022). ‘Sexually transmitted infections and screening for chlamydia in England: 2022 report’.

9. Sawatzky P, Martin, and others (2022). ‘Disseminated gonococcal infections in Manitoba, Canada: 2013 to 2020’. Sexually Transmitted Diseases: volume 49, number 12, pages 831 to 837.

10. Guglielmino CJD, Sandhu S, and others (2022). ‘Molecular characterisation of Neisseria gonorrhoeae associated with disseminated gonococcal infections in Queensland, Australia: a retrospective surveillance study’. BMJ Open: volume 12, e061040.

11. DHSC (2023). ‘Health Protection (Notification) Regulations 2010: proposed amendments’.

Acknowledgments

Authors

Mandy Yung, Rachel Pitt, Michaela Day, Michelle Cole, Suzy Sun, Sema Mandal, Hamish Mohammed, Katy Sinka, Helen Fifer.

Suggested citation

Mandy Yung, Rachel Pitt, Michaela Day, Michelle Cole, Suzy Sun, Sema Mandal, Hamish Mohammed, Katy Sinka, Helen Fifer. Disseminated gonococcal infection in England, 2019 to 2023: data from voluntary reporting. Health Protection Report volume 17 issue 13, November 2023