Objectives HIV postexposure prophylaxis (PEP) is indicated after sexual exposure with high risk of transmission. Men who have sex with men (MSM) are the main target of PEP. The aim of our study was to investigate the experience and shortcomings of PEP among people with a high risk of HIV exposure.
Design and methods Subjects with ongoing follow-up for HIV infection and PEP history were selected for the qualitative study. Semistructured interviews were conducted at the patients' homes. They were audio-recorded, transcribed and deidentified before data analysis, double coding and thematic analysis with an inductive approach.
Results Twenty-three patients were eligible for the qualitative study. Thirteen interviews were carried out. All patients were 20-60-year-old MSM. The median time between PEP and HIV diagnosis was 3.3 years (interquartile range (IQR)25-75=0.9-4.9). Many participants reported negative PEP experiences: awkward access to the PEP clinic, uneasiness and shame in the hospital setting, unpleasant interaction and moral disapprobation from the medical staff, treatment intolerance and prevention messages that were ’inconsistent with real life'
Conclusion Our data highlight PEP management failures among its target population that may have compromised any subsequent attempts to seek out PEP. Practitioners should be more aware of MSM sexual contexts and practices. PEP consultations should provide the opportunity to discuss prevention strategies with highly exposed HIV-negative subjects, which may include pre-exposure prophylaxis.
- postexposure prophylaxis (hiv)
- qualitative research
- sexual behaviour
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Non-occupational postexposure HIV prophylaxis (PEP) in France currently relies on a triple combination therapy. It has to be initiated within 48 hours post exposure and is given for 28 days.1 PEP is recommended regardless of the sexual practice for people exposed to an HIV-positive partner if the partner’s plasma viral load is above the detection limit and for people exposed to a partner of unknown HIV status belonging to a high-prevalence group. Risk evaluation based on the patient’s declarations therefore requires a long and detailed medical interview that is crucial not only for PEP prescription, but also for prevention messages.
Several studies have shown that non-occupational PEP is cost-effective only for receptive anal intercourse. Men who have sex with men (MSM) are therefore the target population for PEP.2–4 Lack of knowledge about PEP among MSM is one of the major limitations of its effectiveness.5–9 However, difficulties to access the PEP consultation or a trying experience during a previous PEP consultation may also limit its use.
Several studies explored the circumstances leading to PEP,10 11 but little data exist on the experiences of PEP users. Our aim was to analyse the PEP experience among HIV-exposed subjects, to understand the difficulties and shortcomings related to PEP use and to draw up ways of improving PEP consultations. To select highly HIV-exposed subjects, we identified HIV-positive patients from a French reference centre with previous PEP experience before they became HIV-positive. We held semistructured interviews with them.
PEP visits at Toulouse University Hospital, France
From 2004 to 2012, non-occupational PEP was given in the infectious diseases department of the hospital. The PEP consultation was open 24/7 and fully covered by French health insurance. PEP users were managed by the on-call infectious disease specialist.
When PEP was prescribed, a starter pack for 3 days of treatment was provided, and the patient had to subsequently pick up the full prescription at the hospital pharmacy during working hours. Follow-up visits were offered for counselling and discussing HIV test results.
All infectious disease consultations at Toulouse University Hospital were filed in the encrypted Nadis database, with restricted access, following written authorisation from the patient.
Recruitment of patients for the qualitative study
Nadis also includes HIV-infected patient follow-up data. Eligible patients for our study appeared both in PEP and HIV databases. Inclusion criteria were to be HIV-positive and to have experienced PEP before HIV diagnosis. Twenty-three HIV-positive patients currently being treated had received PEP between 2004 and 2012. Personal identifiers were accessible only to the three study investigators (RP, LC and GM-B). According to the study protocol, the HIV referring physician for each patient was informed about the study and could offer his patient the chance to participate. If the patient agreed, the principal investigator (RP) contacted the patient to schedule an appointment. Recruitment took place between May and November 2014. No financial compensation was given to participants.
Semistructured interviews were conducted by the principal investigator (RP) at the patient’s home.
An interview guide (box) defined the main topics while allowing flexibility to address random concerns as they emerged during the interviews. Only a portion of the findings has been selected in this paper (‘PEP visit’ section of the topic guide).
Guide for interviews
Early sex life
Relationships with friends and family, coming out, studies and intended occupation, associative engagement
Information on HIV/AIDS and HIV prevention
Sociability behaviour, ways to meet partners
Sexual risk management (condom use, HIV tests, sero-adaptative behaviour)
Knowledge of PEP*
Sexual intercourse context when seeking PEP*
Course of the visit*
Feeling regarding face-to-face interaction with the practitioner*
Social and sexual context (celibacy, conjugal life, single or multiple partners, source of transmission identified or not, safe sex and/or unprotected sexual intercourses)
Social and sexual changes after HIV status change
Current sex life
Relationships with friends, family and at work, associative engagement
Sociability behaviour, ways to meet partners
Sexual risk management (condom use, sero-adaptative behaviour, ‘community’ sexuality)
Respondent’s life story with two relevant events for the study: PEP consultation and HIV transmission. Examples of topics to be discussed.
* This article concentrates on these topics.
PEP, postexposure prophylaxis.
One pilot interview was held to validate this guide. All interviews were audio-recorded and subsequently transcribed and deidentified (names of people and places were removed) by the interviewer before destruction. Each transcription was sent to the corresponding participant to validate correct transcription of the discourse.
The transcript files were entered into Word and Excel software. They were analysed using framework analysis.12 First, repeated readings allowed familiarisation with the data. Then an inductive approach was used for open coding of transcripts. Categories and subcategories were defined by identifying recurring themes. Double coding was performed independently and compared (RP and J-YLT), and then the final codebook was validated by two other investigators (LC and GM-B). A written report was produced for each transcription, with analytical themes and quotations used to support each theme.
Among the 2495 individuals seeking PEP after high-risk intercourse between 2004 and 2012, 23 were later HIV-positive (median time of transmission after PEP: 3.3 years, IQR25-75 = 0.9–4.9). All respondents were proven HIV-negative before and at least 1 month after the PEP. All were MSM aged between 25–55 years (mean: 40.9 years, SD 8.0). The times of PEP visit and HIV acquisition, and characteristics of their PEP visit, are given in table 1.
Thirteen interviews (12/23 patients and one pilot interview) were recorded, with an average length of 63 min (figure 1). Patient characteristics are provided in detail in table 2. Data saturation was reached in the ninth interview (ie, no new information or theme was revealed by analysing subsequent interviews).
Original data (in French) are provided in the online supplementary appendix.
A journey full of pitfalls
Many respondents had difficulty finding the location of the PEP consultation. Most went to the emergency room, but the emergency team were often not aware of specific PEP guidelines:
I was at a reception desk where I had to tell them why I was there, with random people all around me. Some people had broken their legs. Kids were screaming out in pain. I waited for two hours before I was told to go ‘straight’ to the Department of Infectious Diseases. (Respondent 10)
People came to the hospital for PEP counselling at any time, often late at night or over weekends, consistent with periods of greater sexual activity. The waiting time before the medical interview was almost always long because of other duties for the infectious diseases specialist on call:
I ended up waiting in a corridor at the Department of Infectious Diseases on a Saturday morning. Random people, cleaning ladies and patients were passing by me. I couldn’t meet one of the doctors as they had not finished visiting their patients upstairs. (Respondent 6)
I was welcomed by a woman. Then nothing happened for an hour and a half; I was simply sitting on a chair. The consultation hardly took five min. Then, I even waited for more than half an hour for the blood tests. (Respondent 7)
When PEP was prescribed, the starter pack for 3 days of therapy meant the patient had to return to the hospital to pick up the full treatment, adding distress:
The doctor prescribes you two or three pills for the very first days of the treatment. Then, you have to come back to the hospital and find its pharmacy. This also means having to face a pharmacist who knows exactly what you did when he reads the prescription. And seriously, no one can really find this place if they have not been there before. (Respondent 10)
PEP users are healthy subjects who were not used to seeing doctors or dealing with the hospital organisation. Inexperienced people were faced with administrative procedures that seemed tedious, and with an unfamiliar organisation (places, medical staff). This statement is supported by respondents for whom access to PEP was facilitated when an HIV-positive or PEP-experienced subject accompanied them. It is clear from interviews that PEP requires logistics that PEP users found very cumbersome in practice.
A stressful situation
Many respondents referred to their fear of transmission:
When I came back home, it felt weird and wet. I went to the bathroom and … I took the tip of the condom out of my ass. It was full of semen. It did break and [my partner at the sauna] didn’t tell me. I was frightened to death. I even forgot to lock the door of my flat when I left. (Respondent 8)
Anxiety was increased by the sense of emergency surrounding PEP, by the long wait for the consultation, by the hospital setting and by the large variety of staff involved (reception, physician, nurse, pharmacist):
I had read on the Internet that the medicine is ineffective if you take it more than four hours after the incident. At least, it isn’t as effective as it might be. I was astonished to see nobody seemed in a hurry. I waited for hours when they could have prescribed me the medicine immediately. Thus, it seems inconsistent with what I knew about the situation. (Respondent 6)
I just kept waiting in a simple corridor. The wait was unbearable. Hospital staff kept passing by me with their white coats in the middle of the night. The lighting was gloomy. I have always hated hospitals. (Respondent 3)
Almost all participants were apprehensive about meeting the doctor, feeling ashamed and fearing judgement:
I was ashamed of the situation. I was in a doctor’s office at night and I had to tell him all the details of my recent hanky-panky. By the way, I lied about it and said it was a condom breaking. I couldn’t take responsibility for what I did. (Respondent 4)
Interviews revealed a clear dichotomy between the circumstances leading to consultation (sexual intercourse that should have remained a moment of pleasure) and the consultation (face-to-face with a doctor in an unfriendly environment). Prolonged waiting before PEP undoubtedly increases the fear of infection, while the consultation circumstances worsened the guilt and the shame of judgement.
Face-to-face with the infectious diseases specialist
The first concern was often the difficulty to identify the infectious diseases specialists:
He looked very young. I remember he did not introduce himself. In some way, it shocked me. Would you be able to talk about your sex life to a guy who never tells you who he really is? (Respondent 3)
A number of attitudes and physician’s words were experienced as offensive. Half of the respondents (6/12) reported a value judgement about sexual practices (multiple casual partners, unprotected sex) and moralising language; when experienced face-to-face, this could be painful and bring up negative personal experiences:
What she told me really scandalized me. I am not kidding! In fact, she told me ‘You certainly would not be here today if you had not hung around in a backroom to get fucked’. These were not her words but that’s honestly and exactly what she meant. (Respondent 8)
In my whole life, I have felt judged three times for being homosexual. The first time was when my mother heard I was gay. The second time was when I served in the army. I was kept away from some missions, supposedly for security reasons. And the third time was when I talked to this doctor. He was contemptuous. (Respondent 9)
Prevention messages delivered during the PEP consultation (and during the subsequent appointments) seemed scarce and not standardised. There was a huge discrepancy between these messages and the reality of the patients’ sex life:
He told me I should suck my partner off with a condom; I should wear rubber gloves to finger my partner. That kind of talk. I remember I laughed when we had this conversation. I wanted to ask him if he had ever had sex in his life (Respondent 6)
Once again, there was a dichotomy between this intimate experience, involving subjective feeling and emotions, and the doctor’s challenge, which consists of objectively stratifying the risk. Respondents would like doctors to give them confidence, which implies knowing and accepting reported sexuality. This lack of confidence could have subsequently incited the patient not to use the care system and PEP consultation again, as discussed below.
Tolerance of PEP agents varied but all respondents reported side effects. Four respondents had to take some days off due to asthenia and serious gastrointestinal intolerance:
I really thought I was going to die. I spent whole days in the bathroom. I threw up. I had diarrhoea. It really felt like the worst gastro-enteritis I have ever experienced. I was constantly exhausted. (Respondent 5)
Four respondents stopped PEP because they could not withstand the drugs. One respondent mentioned the lower tolerance of antiretroviral drugs for PEP users than for HIV-positive patients.
Overall, many undesirable side effects were described, but the context undoubtedly played a large role (a subject who was not sick taking antiretroviral treatment).
Subsequent use of PEP
Among the respondents with a bad experience, two different attitudes were expressed: (1) complete rejection of PEP in the case of recurrent exposure to HIV or (2) trust in PEP, and acknowledgement of the need for highly effective preventive interventions in the case of high-risk sexual intercourse despite their own disappointing experience:
You have really no idea how my friend told me off [for the whole story of the condom breaking, the day before, with an unknown man]. She was ready to drive me to the hospital but it was now out of the question. The memories of the previous experience were too bad. The feeling of being judged. The treatment I could not cope with. (Respondent 7)
I imagine I could go back there if my health were at stake. I guess I would do the same if my boyfriend’s health was at stake too. (Respondent 6)
These extracts highlight that a first negative PEP experience had adverse consequences and could cause rejection of this preventive intervention. Of course, other parameters such as poor sexual risk assessment should be considered.
Most generally, PEP consultation was often the first confrontation with the hospital care system and could be a turning point for the future (medical staff relationship, prevention means access).
MSM are the main population targeted by PEP and represent a high proportion of people seeking an emergency consultation for PEP. It should be noted that all HIV-positive patients followed in our centre with previous PEP experience were MSM.
Some authors studied the contexts where unsafe sex led to PEP and argued that unsafe sex happened in spite of participants’ knowledge about safe sex, and as a consequence of temporary absence of control driven by social and emotional factors.10 11 Other studies aimed to investigate the modification of sexual practices after PEP. Korner et al showed many ambiguities in the narrative of MSM with PEP experience: many participants said they practised safe sex before PEP and continued safe sex afterwards.13 PEP was promoted as an adjunct to safe sex, not as an alternative. In this way, the perception of risk seems to be a crucial parameter.14 These different elements were similarly developed in the narratives of our participants (detailed data not provided in this article).
Our interviews aimed to investigate the experience of people seeking PEP and to determine if a bad first experience might limit subsequent PEP use among people whose HIV seroconversion suggests unsafe sexual practices.
The respondents reported many unpleasant situations and shortcomings that can arise in the organisation of a PEP consultation. Access to this consultation seemed difficult (lack of information about the location and long wait). Respondents were most often in a stressful context (ashamed of talking about their sex life, dreading HIV infection and uneasy in the hospital setting). They were highly likely to have a bad experience when meeting the medical staff, reporting moral judgement from the practitioner. Tolerance of antiretroviral drugs was poor. On the whole, they were not keen on turning to PEP again in case of recurrent identified risk.
Antiretroviral therapy was most often poorly tolerated; protocols should be optimised to maximise adherence.15 Studies also demonstrated that handing out the full 28 days of treatment at once rather than a 3-day starter pack improves compliance and facilitates the whole process for patients; this should be discussed according to the organisation in each reference centre.16 Similarly, teams need to be trained to improve patient guidance inside the medical centre, and practitioners on duty need to be aware that the time factor is of prime importance in PEP management.
This study highlights that MSM sexual, social and emotional contexts are underappreciated and often unknown by some doctors which may generate inappropriate comments. Studies show that counselling could have a real impact after PEP.17 18 Follow-up visits should be optimised with preventive messages correlated with the reality of their sex lives. Furthermore, pre-exposure prophylaxis (PrEP) has been available in France since January 2016 and is now an important concern among HIV-negative gay men. PrEP knowledge is still very poor, even among the most exposed people and PEP users.19 20 Visits for PEP could identify subjects involved in unsafe sex.21 22 Doctors have to inform MSM about PrEP and to encourage them to start PrEP after PEP.
This work is the first to be carried out on a previously understudied cohort. Double coding and respondents’ validation were used to ensure the rigour of the data analysis. Our results provide valuable information on the experience of people seeking PEP. The results of this study cannot be generalised to all subjects consulting for PEP because only HIV-positive patients were included. We wanted to investigate a homogeneous population with a high risk of HIV acquisition. Including PEP users who did not subsequently seroconvert might have provided a broader range of experiences. We cannot exclude the possibility that the PEP experiences lost in follow-up or not-interviewed patients, among the initial selection, would have been different. The PEP experience could have occurred several years before the interview, and a ‘memory bias’ must be considered: some moments could be reconstructed in memories according to past emotions. This study was conducted in a single reference centre: data from other centres could consolidate it and help to improve local practices.
To conclude among PEP users, a negative PEP experience may be decisive for the future and may contribute to rejection of PEP, and more widely to a mistrust of doctors and the care system. This study highlights the importance of the quality of interaction between doctors and HIV-negative MSM who present for PEP. Patient experiences question medical practices, and whether qualitative interviews are a useful tool to highlight unsuspected deficiencies and constantly improve practices.
Men who have sex with men are the most exposed to HIV and postexposure prophylaxis (PEP) can prevent HIV transmission.
Many respondents reported difficulties when having recourse to PEP, regarding clinic access, face-to-face interaction with doctors and/or treatment tolerance.
These difficulties could lead to PEP rejection among people who are highly exposed to HIV, even when a risky practice has been identified.
Thanks to Héloïse Delagraverrie and Anaël Allaire for the data translation.
Handling editor Jackie A Cassell
Contributors RP, GM-B and LC conceived the question for this study. RP undertook the data collection, designed and performed the data analysis and wrote the first draft of the article. J-YLT performed the data analysis. All authors contributed to data interpretation, commented on and approved the final draft.
Competing interests None declared.
Patient consent Obtained.
Ethics approval Ethics Committee of Toulouse University (number TOU3-1073).
Provenance and peer review Not commissioned; externally peer reviewed.