Investigating possibilities for surveillance of long term chlamydia complications in the Netherlands: A qualitative study.

Chlamydia trachomatis (chlamydia) is one of the most reported bacterial sexually transmitted infections (STI) worldwide [ 1 ]. Chlamydia infections can lead to complications such as pelvic inflammatory disease (PID), which subsequently could lead to tubal factor infertility (TFI) or ectopic pregnancy (EP) [ 2 ]. Globally, the age-standardized rate of PID prevalence was 53.19 per 100,000 population in 2019 and for EP it was 342.22 per 100,000 population [ 3 ]. A study in the United Kingdom estimates that every 1,000 chlamydia infections in women aged 16–44 years, on average, results in 171 extra episodes of PID, 2 more EP and 5.1 more women with TFI at age 44 years [ 4 ]. To timely detect chlamydia infections to prevent complications, many countries implemented chlamydia trachomatis (chlamydia) control activities ranging from active case finding to screening programmes [ 5 – 7 ]. However, there is an ongoing debate about the impact of these ‘test and treat’ strategies on reducing chlamydia population prevalence and complications including PID, EP and TFI [ 7 – 10 ]. A possible way to increase knowledge about the impact of control strategies on occurrence of complications is by examining population-level associations between chlamydia control activities and clinical complications [ 11 , 12 ]. Several countries compared the association between control activities and clinical complications [ 11 , 12 ]. The authors stress the urgent investment needed to establish surveillance systems to record and monitor trends of chlamydia related complications, such as pelvic inflammatory disease (PID) over time [ 11 ]. To our knowledge, no country has implemented routine surveillance of chlamydia related complications. In the Netherlands, there is a debate about the public health relevance of active case finding by testing for asymptomatic chlamydia infections [ 7 , 10 ]. This debate is based on lack of practice-based evidence that widespread testing of asymptomatic infected individuals can reduce population prevalence [ 8 , 9 ]. Also, a number of potential harms from overdiagnosis and overtreatment have been reported, such as psychological stress and potentially unnecessary use of antibiotics, which could lead to antimicrobial resistance [ 7 , 10 ]. As a result, van Bergen et al. [ 10 ] suggest that future strategies should reduce, rather than expand, widespread testing for asymptomatic chlamydia infections. Some countries have already implemented small changes to their testing guidelines, e.g. focussing more on reducing harms from untreated chlamydia infection rather than onward transmission [ 13 ]. Australia replaced its focus from testing uptake to strengthening management of diagnosed infections, which involves improving retesting, partner management and PID diagnosis [ 14 ]. In the Netherlands, guidelines recommend chlamydia testing for persons experiencing symptoms, their contacts, and risk groups regardless of symptoms such as persons who had unprotected sex [ 15 ]. But in the near future, guidelines will recommend to limit asymptomatic chlamydia testing for both men and women. Such a change in chlamydia control activities might impact chlamydia surveillance, which is based on people getting tested for chlamydia at Sexual Health Centres (SHC) or the general practitioner (GP) [ 16 ]. This highlights the need for setting up alternative ways to monitor trends in chlamydia infections. In addition, better insight into chlamydia complication trends is needed when changing the focus from infection control to disease management [ 10 ]. Currently, no national surveillance system for PID, EP and/or TFI is in place. We aimed to investigate the possibilities to introduce long term chlamydia complications (e.g. PID, EP and TFI) under surveillance in the Netherlands according to relevant stakeholders that diagnose these complications. More specific, we aimed to understand the process of diagnosis and registration of these complications and investigate the view of stakeholders on the relevance of a complication surveillance system when changes of chlamydia testing are in place.

Fifteen in-depth interviews with a purposive sample of gynaecologists (n = 3), medical professionals under supervision of a gynaecologist (n = 2: in vitro fertilization (IVF)-doctor and fertility doctor), GPs (n = 6), doctors at a regional SHC (n = 3) and emergency room (ER) doctor (n = 1) were conducted. Gynaecologists, IVF and fertility doctors were grouped and referred to as gynaecologists (n = 5). Ten respondents were female (67%), and ten respondents were 20–39 years old, five were 40 years or older. Respondents worked in seven of twelve provinces in the Netherlands. According to all respondents, patients with symptoms related to PID most often consult a GP and/or gynaecologist, sometimes via the emergency room. All GPs see patients with suspected PID, and all but one GP would always refer a patient to the gynaecologist for further diagnosis and treatment ( Table 1 ). This GP reported occasionally diagnosing and treating PID without interference of a gynaecologist. All respondents acknowledge the difficulty of diagnosing PID, as symptoms are often non-specific and there is no easy, non-invasive diagnostic test. “it is not as if there is an easy test that tells you it is a PID” (Gynaecologist). All GPs were aware of the guideline on diagnosing PID. Some GPs strictly adhered to the guideline with respect to PID symptoms, and expect other GPs to diagnose accordingly. “I hardly ever diagnose or register a PID, because I, as I said, almost never see those classical three; stomach ache, fever and an STI” (General practitioner). Other GPs were less conclusive on what specific symptoms to include for a final diagnosis, and talked more about the overall feeling and the patient’s story. Most respondents suspect a PID based on symptoms and anamnesis (i.e. GPs and gynaecologists) and, if PID is suspected, perform a chlamydia PCR test to identify a current chlamydia infection. GPs were not unanimous on always performing a chlamydia PCR test, one GP assumed that gynaecologists test for a chlamydia infection after the GP referred the patient to them and another GP said they will only test if the patient has a high STI risk. All SHC doctors reported seeing an occasional PID and referring this patient to the gynaecologist for further diagnosis and treatment. All GPs use International Classification of Primary Care (ICPC) codes to register the patient’s diagnosis, but they use different versions of software to register the ICPC codes. PID has a specific ICPC code, that can be administered to the related episode in the patient’s file. Gynaecologists, SHC doctors and the ER doctor think that the GP has the most complete patient files related to complications since they get feedback letters from other professionals to add to their patient’s file. However, most GPs were unsure if the code is administered correctly. Usually a patient comes to the GP with lower abdomen pain, and is later diagnosed, mostly by the gynaecologist, as PID. All GPs and gynaecologists confirm that gynaecologists always send a feedback letter to the GP including the confirmed diagnosis. GPs should then, based on the information in this letter, change the registration code for this patient, from abdomen pain to PID. All GPs, except one, were unsure if changing the registration code was strictly done by their colleagues, but most said they do change the code themselves. All gynaecologists report there is a specific Diagnostic Treatment Combination (DBC) code for PID, although they do not know the code by heart. Three gynaecologists said that, besides the DBC coding, they also use the National Specialistic Fertility Records (LSFD), which has more specific and detailed codes than the DBC coding. GPs reported never diagnosing an EP and always referring a suspected EP to the emergency room ( Table 1 ). The ER doctor confirms diagnosing and treating acute EP, with follow-up by the gynaecologist. All gynaecologists reported seeing EP, mostly as part of a fertility treatment and in the emergency room. SHC doctors reported never seeing or diagnosing EP ( Table 1 ). A positive pregnancy test is always part of the diagnosis process; performing a Chlamydia Antibody Test (CAT) or chlamydia PCR is not always indicated. “I expect the gynaecologist to do that [perform an STI test or consult on STI history]” (General Practitioner). In the DBC coding system, EP is a clustered code with abortion, EP, hyperemesis gravidarum and other pathology related to the first 16 weeks of pregnancy. The LSFD system used by some gynaecologists and the ICPC system used by GPs, both have a specific EP code. The ER doctor uses DBC codes and registers the treatment and referral of the EP to the gynaecologist in the patient’s file. The gynaecologists that use both LSFD and DBC register in both, with LSFD being more specific for EP. According to the respondents, when patients have been trying to become pregnant for over a year, patients consult the GP and the GP refers them to the gynaecologist. SHC and ER doctors report that they do not diagnose TFI in their patients ( Table 1 ). According to most; follow-up diagnostic tests at the gynaecologist involves a Chlamydia Antibody Test (CAT), however, one gynaecologist said they would do a PCR instead. If this test is positive, and the cause of infertility is not related to the male partner, female patients can opt for a transvaginal hydro laparoscopy (THL) or a hysterosalpingography (HSG) for further diagnosis depending on the hospital. Gynaecologists mentioned that these diagnostic tests can also be offered as a treatment option as they supposedly can open up the Fallopian tube. Some hospitals offer this test without a positive CAT. Gynaecologists report that the registration of TFI is ambiguous. The DBC coding system has more general codes, such as initial fertility testing, with a subcode called subfertility. According to one gynaecologist this subcode is not registered properly; “Subfertility caused by tubal pathology is a specific DBC code, but is registered very poorly”. The LSFD has a more specific coding system, in which you can register the cause of subfertility as tubal factor infertility. The GP registers a referred patient under subfertility. Diagnostic tests, such as HSG and THL are registered in the patient’s file, however more general as diagnostic test and not with a specific code stating HSG or THL. In the LSFD these tests are registered as specific codes. Most respondents acknowledge the importance of complication surveillance to keep track of possible changes in trends in chlamydia related complications and named many possible methods and sources for obtaining information, such as the data collection at the health insurers, obtaining data based on the ICPC or DBC codes from the medical practice (hospital and/or GP) or setting up cohort studies. Most understand the benefit of surveillance on long term complications, however would not immediately see it contributing to their daily work. When thinking about it more, most said they would use it to inform their patients about their risk of getting or having a complication. However, most respondents acknowledge that it is hard to determine the causality between a (previous) chlamydia infection and a complication. When discussing what would change in diagnosing complications and in trends of complications if the chlamydia control strategy would change to less asymptomatic testing, all but one respondent were clear that the complication diagnosing process would not change, as symptoms would still occur. However, some expressed concerns that for example less testing, diagnosing and treating of chlamydia could result in more undiagnosed chlamydia and consequently more complications. One GP expected that less chlamydia testing and diagnosing could lead to missed or delayed diagnoses of complications, as the GP would not be triggered to think of a complication when a previous chlamydia infection is not reported in the patient’s file. One gynaecologist expressed concerns about increasing chlamydia prevalence and subsequently an increasing number of positive Chlamydia Antibody Tests (CAT). This would result in an increase of invasive fertility testing as, according to protocol, a positive CAT is a proxy for a HSG or THL diagnostic test. According to this gynaecologist, this may lead to an increase of false positive HSG results, and an increase in, possibly unnecessary, laparoscopies.

Patient files of gynaecologists are likely to be most complete for monitoring trends of diagnosed chlamydia related long term complications in the Netherlands. However, when establishing a chlamydia complication surveillance system, professionals should be engaged in further standardizing diagnosis and registration practices. This will improve the quality and interpretability of complication surveillance and facilitate comparison between countries.

The Dutch healthcare system is based on universal access to care, including compulsory medical insurance for all. All residents of the Netherlands can access care through a basic health insurance package. On top of the mandatory nominal premium, individuals are required to pay a deductible; an amount that insured individuals must pay out of pocket each year before their health insurer begins to reimburse expenses. Some care (e.g. at the General Practitioner) is excluded from co-payment. The General Practitioner (GP) acts as a gatekeeper and can make referrals to medical specialists. Medical specialists (including gynaecologists) are linked to public hospitals [ 17 ]. A qualitative interpretative phenomenological method was used [ 18 ]. Phenomenology seeks to understand the individual interpretation and view on a phenomenon [ 18 ]. In our study we were interested in individual interpretation of guidelines and registration. Diagnosis of complications is set in guidelines, however interpretation seems difficult [ 19 ]. To better understand the experiences of professionals in applying these guidelines and related registrations in their daily practice, we conducted phenomenological interviews. This interpretive phenomenological qualitative study included Dutch medical stakeholders in the diagnosis and registration of chlamydia related complications identified by a stakeholders analysis conducted at the start of the study. In the stakeholder analysis the researchers identified relevant stakeholders and classified their potential influence and interest towards the subject. Stakeholders with low and high influence combined with high interest were invited. This resulted in inviting gynaecologists, GPs, doctors working at a regional Sexual Health Centre (SHC) and emergency room (ER) doctors to participate in the study through network and snowball sampling. The sample size was determined by the principle of saturation for the main themes of the interview guide (see S1 File for interview guide). When saturation was not reached and recruitment was difficult, medical doctors working under supervision of a gynaecologist, GP, ER doctor or SHC doctor were recruited. Data were collected using a semi-structured interview guide for individual face-to-face or online interviews was developed. Participants received a leaflet that explained the study and their privacy rights. After verbal consent for recording, the interview was either videotaped or audiotaped. After starting the recording, respondents expressed their consent for participating in the study. The interview guide consisted of four main items ( S1 File ); diagnosis process (e.g. related symptoms, standard STI test), with the main theme: does complication diagnosis change when chlamydia testing strategies change? registration process (e.g. registration codes, standardized practice), with the main theme: is registration reliable and uniform within and across professions? importance of complication surveillance (e.g. knowledge on trends, use of surveillance information), with the main theme: do professionals acknowledge the need for complications surveillance? possibilities for complication surveillance (e.g. implications of data sources, obtaining necessary information for surveillance), with the main theme: getting a first insight into needs and possibilities regarding complication surveillance New relevant topics raised by the interviewees in the first interviews were added to the interview guide. Profession, region of workplace (province-level), gender and age group were registered. The interviews lasted between 20 and 75 minutes. Respondents were recruited and interviews were conducted from 9 December 2021 to 20 July 2022 by the first author. The research team consists of three epidemiologists working in infectious diseases and STI research. The interviewer had no prior interaction with the respondents regarding the themes described, however some respondents were part of the network of the research team, the interviewer and other respondents. All interviews were transcribed by a professional transcription firm. Transcripts of recordings were checked by the first author to ensure accuracy. To identify individual experience with interpreting guidelines and registrations in our qualitative dataset we conducted an interpretive thematic analysis using MAXQDA Plus 2022 (Release 22.0.0) for data management [ 20 ]. Two coders generated codes based on the interview guide and double-coded one transcript. After discussion, a new code book was generated and tested by double-coding a different transcript. After agreement of the code book, one coder continued to code all other transcripts and discussed uncertainties with the second coder, and, if there was no consensus, a third person was consulted. This study was reviewed by the Medical Ethical Committee Utrecht, the Netherlands, which judged that it was not subject to the law for Medical Research Involving Human Subjects (21-705/C). All respondents provided informed consent for participation.

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