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Prevention Research

“I Just Decided to Stop:” Understanding PrEP Discontinuation Among Individuals Initiating PrEP in HIV Care Centers in Kenya

Ongolly, Fernandos K. MAa; Dolla, Annabel BAb; Ngure, Kenneth PhDc,d; Irungu, Elizabeth M. MD, MPHa; Odoyo, Josephine MPHb; Wamoni, Elizabeth BCNa; Peebles, Kathryn MPHe; Mugwanya, Kenneth PhDc; Mugo, Nelly R. MDa,c; Bukusi, Elizabeth A. MD, PhDb,c,f; Morton, Jennifer MPHc; Baeten, Jared M. MD, PhDb,c,e; O'Malley, Gabrielle PhDc

Author Information
JAIDS Journal of Acquired Immune Deficiency Syndromes: May 1, 2021 - Volume 87 - Issue 1 - p e150-e158
doi: 10.1097/QAI.0000000000002625
  • Open

Abstract

BACKGROUND

HIV preexposure prophylaxis (PrEP) is highly effective when taken correctly and consistently by individuals at substantial risk of HIV infection.1–3 The WHO has endorsed PrEP as a primary pillar in its recommended HIV prevention strategy.4 As of July 2020, approximately 650,000 individuals have initiated PrEP, including 63,000 in Kenya.5 Although most of those who have ever tried PrEP are from high-income countries, the number of individuals initiating PrEP from low-income and middle-income countries is increasing, especially in Eastern and South Africa.

Globally, there is consensus that PrEP discontinuation rates are high, although greatly variable depending on the population and discontinuation measurement methods.6–9 There have been significant efforts to generate consensus on a “PrEP cascade,” mirroring the HIV treatment cascade approach to measuring and improving HIV treatment programs.10–13 In the HIV treatment continuum, significant drop-offs after antiretroviral therapy (ART) initiation are an alarm signaling crucial follow-up is necessary to avoid individual-level and population-level increases in morbidity, mortality, and development of resistant HIV virus. Unlike ART, which must be taken for life and is the only therapeutic choice for people living with HIV, PrEP is meant to be taken only during “seasons of risk” and is one of several HIV prevention methods available.14,15 Thus, compared with ART, higher discontinuation rates for PrEP programs can be expected, although an acceptable threshold of discontinuation is not yet defined.

Although PrEP discontinuation rates in clinical trials and demonstration projects have been well characterized, little is known about PrEP discontinuation in routine public health settings in sub-Saharan Africa.16,17 Perspectives from end-users from these nonresearch settings are especially important because the research environment, study procedures, and/or study participant criteria may significantly influence the nature of the user experience.18,19 Understanding end-user discontinuation decisions and experience in nonstudy settings is crucial to meaningfully interpret drop-offs in the PrEP cascade, calibrate expectations around PrEP continuation, and devise an appropriate programmatic response.17,20,21

Since 2017, the Kenya National AIDS and STI Control Program (NASCOP) has been promoting the scale-up of PrEP delivery as a key component of its national HIV prevention strategy.22 According to the 2018 Kenya PrEP implementation status report, about half of those who start PrEP continue using it. Of those who discontinue PrEP, only half are documented in clinic records as being “stopped” indicating some consultation with a clinician. The other half are reported as “lost to follow-up;”23 little is known about reasons for discontinuation among this population. This qualitative study explores discontinuation decisions of individuals who initiated PrEP at public health HIV clinics (CCCs) in Kenya and who discontinued PrEP without notifying their health care providers.

METHODS

Study Setting

Partners Scale-Up is an ongoing implementation project evaluating PrEP delivery in public health HIV comprehensive care clinics (CCCs) in central and western Kenya24; PrEP services are integrated in CCCs using existing facility personnel and infrastructure.

Data Collection and Analysis

During routine calls to trace PrEP clients who had missed refill visits, clinic staff informed clients of the discontinuation study. Clients who expressed interest were given researchers' contact information, and client contact information was shared with researchers for interview scheduling. Two experienced Kenyan researchers conducted the interviews in the participant's preferred language and place of choosing, including health clinics, restaurants, public parks, participants' houses, and in study vehicles. Interviews lasted between 15 and 40 minutes, were audio recorded, translated (where necessary), transcribed verbatim, and uploaded into Dedoose (www.dedoose.com) for analysis. An initial codebook was developed inductively. Two researchers independently applied the initial codebook to 5 transcripts, adding and refining codes as needed. A final codebook was developed through consensus and on direct comparison of independently coded transcripts. Two researchers used the final codebook to code half of the remaining transcripts and then reviewed each other's coded transcripts. Disagreements were resolved through review and discussion among the larger study team.

Ethical Considerations

Ethical approval was obtained from the Scientific Ethics Review Unit (SERU) at the Kenya Medical Research Institute and the University of Washington Human Subjects Division in the United States. All participants were aged 18 years or older and provided written informed consent.

RESULTS

We interviewed 46 participants across 24 facilities, most of whom had taken PrEP for less than 6 months. Four participants had not discontinued PrEP but had had transferred to another clinic. Individuals had an average age of 32 years (median 30 years), and 65.2% were women (Table 1).

TABLE 1. - Study Participants Characteristics
Age Male Female
Age 18–25 4 5
26–35 9 15
36–45 2 8
46–55 1 2
Duration on Prep <2 mo 10 13
3–4 mo 4 6
5–6 mo 1 5
>6 mo 1 6
Total 16 30

Relationship Contexts and Motivations to Initiate PrEP

The relationship contexts in which our participants sought to keep themselves HIV-negative were highly varied. Participants in known serodifferent relationships frequently spoke of their decision to take PrEP in terms of love and commitment to their partner living with HIV.

I used to take the drug [PrEP] because I love my partner and I did not want her to feel like I was leaving her.” 31-year-old man

Other participants described being in relationships characterized by a lack of trust and transparency about a partner's HIV status. These participants suspected that a partner's behavior was putting them at risk for HIV.

“I was a bit skeptical about my partner …I was not sure about her movements…. … and that was the reason why I started using PrEP.” 28-year-old man

“…as for me I was taking [PrEP] because I did not trust him …I knew that I was not going to take them for long and once I was out of that risk I stopped…” 34-year-old woman

Finally, some participants were themselves in multiple sexual relationships with partners of unknown status.

I do not have one boyfriend. I have three and I do not know their status…that was why I decided to use PrEP.” 23-year-old women

“I had so many friends (sexual partners) because when I do this matatu [taxi bus] job, I meet so many people on the way and I heard that some are sick [HIV positive]. So taking of PrEP was to help me so that I do not get the disease.” 19-year-old man

Multilayered Discontinuation Stories

Individual participant narratives around discontinuation of PrEP typically encompassed a constellation of coinciding reasons (Table 2). Discontinuation descriptions situated PrEP users within the context of fluid and sometimes challenging relationships, mobile living and work arrangements, burdensome clinic visit requirements, bodies intolerant of PrEP side effects, personal dislike of having to take a daily medication, and family and community stigma around HIV. Most participants expressed willingness to restart PrEP if their life circumstances or PrEP delivery options were to change.

TABLE 2. - Interplay of Person, Interpersonal, Facility, and Community Factors Discouraging Continuous PrEP Use
Summary Abbreviated Narrative of Reasons for Stopping PrEP
Side effects, not physically living with partner [With PrEP], I used to feel dizzy and loss of appetite. I called him [health care provider] and talked to him about the side effects. He encouraged me to continue taking it and he recommended me to go back 2 months later then he gave me another 2 tins…… I took one tin and then I lost my weight completely. I stopped taking it from that time. I have one tin that I did not take, then my husband is not in Kenya, he is in Uganda and we do not meet. 27-year-old woman
Pill burden, stigma of CCC The pill is so big and it chokes, so I found it so difficult… [W]e were getting it together with those who are HIV-positive and there was a lot of stigma. You see that people really stare and once you are there, it makes you to be so afraid because it makes you feel that everyone is now aware that you are HIV-positive too. So I feel that PrEP should be delivered in a different side that is not the CCC. I feel that, that would be very nice. 29-year-old woman
Wait time burden, relationship stress due to infidelity, no sex with partner Sometimes I would get there [CCC for PrEP] at 10:00 am and leave at 2:00 pm and that was the problem….I did not like that because I wanted get there, get my refill and leave and not have to wait like the rest……I used to trust my husband but when he started telling me about himself, I got upset. I told him that I did not want PrEP. I had trusted him and he was doing such things [seeing another woman]. It made me stop using PrEP again even after I had decided to use to save my children's lives but he wronged me…. …When my husband is around, we are never together (sexually) because he stays for 3 days then he leaves. 22-year-old woman
Motivation to overcome side effects, temporary partner separation I was using because I loved her that was the only thing… I think I would have gotten used to the side effects…You see taking PrEP it starts with motivation…it is not just because you are engaging in sex with a person who is infected but because you love that person because if you do not take them you would not love that person and there will be a chance of you getting the virus… I will resume PrEP [when partner returns]. 24-year-old man
Pill burden, relationship breach of trust demotivating, drugs stigmatizing I have never been subjected to long-term drugs and that thing disorganized me terribly and that is why I stopped. There were no side effects but I have always had problem with taking drugs, you better give me an injection. I decided to stop PrEP because that thing was traumatic to me. Imagine you are just starting your marriage and then all of a sudden within a short period of time…what kept me in that marriage up to now is that the lady was pregnant and I had thoughts of leaving her. The baby is the only reason why I have kept her around…. those drugs are big and they are of the same size and you cannot differentiate because one day…there was one time I traveled home in April, I was hiding my small bag so that someone should not come across them and you know the society that I am from. I was worried for someone to see them. 34-year-old man
Partner discourages PrEP use, stigma CCC I decided to stop using PrEP for 2 reasons…. I stopped using PrEP because I did not like the delivery point for PrEP, because we were being mixed with those who are HIV-positive… But the bigger reason why I stopped using PrEP was because of my partner … My partner was never happy each time that I took PrEP… I think he would only feel happy if both of us are HIV infected. So when I disclosed to him that I had tested and I was HIV-negative and so the doctors opted to initiate me on PrEP, that made him unhappy…Each time that I took PrEP he would insult me and quarrel a lot…. He would insult me that I am a prostitute, that I am stupid or even that I am boasting that now I am HIV-negative and he is not. He used to have so many insults that would vex my spirit and that made me to decide to stop using PrEP because all along he had been taking his ARVs and I had not been infected with HIV. So I felt that still, I will be safe even if I stop using PrEP. 24-year-old woman
Facility distance inconvenience/cost, side effects, not with partner I started getting effects from the medicine. …I was vomiting a lot and I was not feeling well. …………I have not seen my partner for a while, she traveled to another town….I do meet [other partners along the transport route] but I stopped taking PrEP because of vomiting…. I used to come to the clinic but it is too far from home, so I used to spend a lot of money on transport, so I wish there was a place closer where I could pick it and even getting medication for the side effects would be better… 27-year-old man
Daily pill burden, pill stigma, condom preference, virally suppressed partner The main reason why I stopped using PrEP is because it is something that is difficult to take especially if you are not sick but still it forces you to take it daily. Again I had already gotten whatever I wanted…yes, my objective was to give birth to a HIV-negative baby and that was pushing me to use PrEP. So once I had already achieved that objective, I decided not to continue taking it. ….Okay another thing is that I had to carry it with me everywhere that I went and some people who were close to me were wondering what kind of drug I was taking. Another thing its color is like the regular ARV so some people talked badly about me, but okay because I knew what I wanted, I just continued taking it…but carrying it with me and taking it every day was something that I did not like. I stopped using [PrEP] because he told me that he is now virally suppressed and that was why I did not see the need to continue using PrEP because I can still as well use condoms and all will just be well…. I am just comfortable with that. 32-year-old woman
PrEP stigma, partner and family opposition, end of relationship I decided to use PrEP because I saw it on social media and learn that it could help me not get HIV …….Despite of me having one boyfriend I do not know if he has other girlfriends. So that is why I got motivated to go for the drug to reduce my chances of getting HIV. …. [I] am staying with my parents and am also a student, so when I was going to work and my sister was cleaning the room, they came across the drug and went and discussed with my parents… So when I came back in the evening, I was called and it was like a meeting meant for me and I was the agenda. And I was asked why I was using PrEP…… They even told me to tell them if I was HIV-positive and I told them I am not and I was using PrEP to help me reduce chances of getting HIV… So my dad and mum started saying that am a prostitute and that the drug is used by prostitutes and that is why am using it… So it was that much and I decided that I would get consolation from my boyfriend and I went and shared with him, but he also became mad at me … So he said if it is PrEP then it means that I have multiple partners and I do not trust him. So he could not tolerate it and he started a fight and even said that if it is about PrEP we better end the relationship because it was clear that I have multiple partners….So when I came back I had a lot of stress and everybody was against me at home. People were saying I am HIV-positive, my boyfriend dismissed me so I had no peace of mind. And that is how I decided to stop PrEP…. He is no more in my life. …if awareness is created so that people like my parents get to know that it is taken by people who are negative then I will [restart], and then another thing if I can move to my own place where I can just keep it without anyone interfering with it the I will just continue using it. 19-year-old woman
Side effects, stigma, partner opposition, relationship end Taking pills every day is a problem, that was the big issue because itching of the body, vomiting. I was told they would go with time, depends on one's hormones. But taking pills every day, I felt was hectic because sometimes I forgot to take it.… The package is very bad. It is like… one day I carried it and I was with my boyfriend, we started fighting because he did not realize the difference between them and ARVs. Until now, we are separated with that man because of that, he does not want to listen to me, he thinks that I am on ART while actually I am on PrEP, so that package annoyed me.…… I really persevered during those 2 mo because I had a partner whose status, people used to say he is positive. So, when I broke up with him, I decided now to hell with the PrEP. … [Now] I am not seeing anyone. If I start seeing someone, first of all we have to be tested…. and we start using PrEP, both of us. So that there is no blame game. 26-year-old woman

Participant Agency in Deciding to Discontinue PrEP

Most of our participants emphasized that PrEP initiation and discontinuation was their decision. They did not consider concurrence from their clinicians as necessary to exercise their agency in stopping.

“You see I am the one who made the decision to stop.” 55-year-old woman

“Like I said it [PrEP] is voluntary and it depends on what plans you have for you and your family.” 29-year-old man

Participants also exercised agency in changing the facility where they accessed PrEP, either for convenience or other preference.

“I stopped coming to this clinic because…my husband got transferred and we moved to our rural home. So I decided to take it [PrEP] from [a facility] which is nearer to where I stay.” 35-year-old woman

Several participants expressed concerns that health care staff would not recognize their right to autonomous decision making around PrEP. Although they wanted to restart PrEP, they did not return to the clinic for reinitiation as they were afraid of being reprimanded.

“I even wanted to come back to the clinic, but I was afraid that I would be questioned and scolded by the health care providers. Most people fear that harassment; it is bad so they decide not to go altogether.” 29-year-old man

Discontinuation PrEP When Their Perceived HIV Risk Diminishes

About half of participants reported discontinuing PrEP when their relationships with known or suspected HIV-positive partner(s) changed and so they no longer believed they needed to take PrEP.

“… I had discovered a lot of things that I never knew [about my partner] and since I had caught him red-handed, I saw no need of being in that relationship. As I was looking for a way out and saving money … I decided to stay until the end of the month……I saw there was no need of risking my life because of a man. When I left that marriage, I stopped taking PrEP.” 34-year-old woman

Other participants reported their HIV risk had been significantly reduced because of geographic separation or minimal sexual encounters with known or suspected partners living with HIV.

"My partner was living up-country while I was here in Nairobi. I decided that there is no need for PrEP because she is not here.” 29-year-old man

“When my husband is around, we never engage in sex because he stays for 3 days then he leaves.” 22-year-old woman

A few participants reported risk reduction because their partners had achieved viral suppression.

“We were given information that when he [partner] is virally suppressed, then I could stop using PrEP because he could not now infect me with HIV. … his [last] viral load test result showed that he is already virally suppressed.” 39-year-old woman

Participants described willingness to reinitiate PrEP if they were to find themselves again in relationship situations where they believed they were at risk of HIV.

“I cannot say I have given up on relationships …If I get someone, we will first come to know our status but if he is not willing to test for HIV, I will resume PrEP or if the one [former partner] who left decides to come back, I will start taking them again.” 26-year-old woman

“I do not know for how long his viral load will be suppressed but as long as it is still suppressed then I will not take it. ……in case there will be need for me to start using it again then I will just use it.” 37-year-old woman

Dislike of Side Effects and Taking Medication Daily

Participant narratives around PrEP discontinuation often mentioned dislike of side effects, whether or not it was articulated as the main reason for PrEP discontinuation.

“It was my own body that could not cope. They were very strong, and I did not use to feel very well… I felt my body was not okay.” 45-year-old woman

Some also found taking a daily pill too burdensome and opted to use condoms for HIV prevention instead.

“I cannot take a pill every day, I would rather even just use condoms every time that we want to have sex [rather] than to take PrEP…” 32-year-old man

Finally, many participants mentioned they did not want friends or family to see them taking a pill every day, as they would be suspected of taking ARVs and hence suspected of being HIV-positive.

“The stigma that I could got from friends who could see me take PrEP because they could not tell the difference between PrEP and ARVs, and so when the stigma became too much I had to pause it a little bit.” 30-year-old man

Delivery Point Factors Related to PrEP Discontinuation

Although relatively few participants identified facility level factors as primary reasons for discontinuing PrEP, service-related factors which discouraged their ongoing PrEP use were very frequently included in participant narratives. Participants referenced discomfort with accessing PrEP at the CCC and being mistaken for someone who was HIV-positive.

“When they see you going to that building (HIV clinic) they will obviously say that you are also infected…As much as you may really want to go and take those drugs, where you will go for them will scare you. People fear being stigmatized.” 45-year-old woman

Other participants reported being unable or unwilling to travel the distance required to get to the clinic where PrEP was provided. Such participants expressed interest in reinitiating PrEP if they could access it from clinics closer to them or from nearby pharmacies.

“Basically, it is just the distance where the clinic is. If you guys can deliver the medicine to us in a private way, we will appreciate, but it is a bit far from where I live.” 32-year-old man

Participants also described challenges getting to the clinic during standard clinic operating hours (mostly between 9.00 am and 3.00 pm) for their follow-up appointments and refills and were discouraged by short return dates required to obtain PrEP refills.

“I stopped because they used to give me very short return dates… while I am busy and sometimes I could go there to get [PrEP and] the clinic closed.” 31-year-old man

“After you test me and find that I am okay and you know that PrEP will protect me, why cannot you give me these drugs for like 6 months so that I take them?” 36-year-old woman

Some of our former PrEP users reported willingness to reinitiate PrEP if they could get it at a clinic closer to them, or if they could receive longer refill dates.

“If they can give me PrEP that would last five months then I would be willing to start using it… They can also refer me to any facility that is closer to me so that I can go start taking PrEP again.” 39-year-old woman

Clients Discontinue PrEP in the Face of Active Partner Discouragement

Approximately one-fifth of our participants described strong partner opposition to their decision to take PrEP. Opposition most often was verbal, although in a few instances physical abuse was also described.

“…When she [partner] found them [PrEP] at my house, she caused chaos asking me why I was using PrEP, that I do not trust her, and she decided to get really mad so she destroyed them. So, I decided to stop using PrEP for the time being to avoid more trouble in the house.” 28-year-old man

“He beat me up because he was saying that first, I never informed him when I was going to pick up PrEP. Secondly, he was saying that it meant that I now had other partners now that I was using PrEP….He was just saying that PrEP is now making me to disrespect him and that it was also making me to be too proud.” 37-year-old woman

Some participants wished the health care facility could provide better support in ensuring family members, partners, and friends have proper PrEP knowledge.

“I can only use PrEP again if the hospital can summon both of us …so that he can also be aware of how PrEP works. Yes, then that would make me use [PrEP] it again.” 37-year-old woman

DISCUSSION

To the best of our knowledge, this is the first published qualitative study to explore decisions around PrEP discontinuation among men and women receiving PrEP at public health HIV clinics in sub-Saharan Africa. Most of our interview participants emphasized their agency in deciding to start and stop PrEP. They initiated PrEP because they had one or more sexual partners living with HIV or of unknown status and wanted to try PrEP as a prevention method. They decided to stop PrEP for a range of reasons important for program implementers and policy makers to consider when calibrating expectations for continuation rates and for effectively scaling up PrEP.

Over half of our participants discontinued PrEP because of a decreased risk, eg, their sexual relationship(s) had changed or a partner living with HIV had become virally suppressed. Such decisions align with public health theories about prevention effective adherence (when PrEP is used during seasons of risk)25,26 and with PrEP as a “bridge” to ART (when PrEP is taken until a partner's viral load is undetectable).27,28 Self-assessments of HIV risk are empirically and theoretically problematic. Individuals may discount risk if they are in a current loving relationship and make assumptions about partner's status or social networks and if they do not accurately anticipate future sexual behavior.29–34 However, overly prescriptive risk assessment tools and practices used by health care providers can make clients feel stigmatized.35,36 Our qualitative data add to existing literature suggesting reasonable/some alignment of PrEP uptake and HIV risk37,38 and suggest PrEP discontinuation may similarly (although imperfectly) be aligned with periods of decreased risk for a meaningful proportion of PrEP users.21,39–41

Counseling to help PrEP users identify HIV risk periods and understand how they will need to take PrEP must be supportive of client autonomy, an important component of patient-centered care, in making HIV prevention choices.42–44 The psychological experience of autonomy has been shown to facilitate intrinsic motivation to enact positive health behaviors, including PrEP uptake and improved experience.45–48 Our participant narratives emphasized their agency in deciding to discontinue PrEP, similar to a study conducted among women accessing PrEP in primary health clinics in Zimbabwe.16 Our study data show that health care providers being overly directive or scolding about discontinuation can be counter-productive to clients reinitiating PrEP.

Our participants frequently referenced logistical challenges of accessing PrEP and expressed a strong desire for more locations to pick up their PrEP and longer refill dates, similar to studies among other populations.8,39,49–51 Delivery of antiretrovirals for HIV treatment has been dramatically simplified and streamlined over the past 20 years to include community-based delivery and multimonth prescriptions; similar approaches should be feasible for PrEP, which has a much lower profile for toxicity.2,15

Our data also align with previous studies showing ongoing HIV-related stigma discouraging PrEP use.36,52–54 More widely available community access points (such as pharmacies or primary health care clinics) would eliminate the stigma associated with the CCC. However, our participants also described stigma of being seen taking a daily pill recognizable as an ARV. Stronger and more widespread sex-positive or health-frame messaging around PrEP may help to reduce stigma within the community.29,30,36,55

PrEP discontinuation due to partner opposition has been linked with broader gendered social norms supporting male authority in intimate relationships.56,57 Although most of our participants citing strong partner opposition were women, several were men. Whereas for some couples, PrEP signifies a way to maintain and deepen their intimate relationships28,58,59; for others a partner's decision to use PrEP represents a threat, signaling distrust, suggesting a desire for sexual independence, or to assert a kind of superiority conferred by an HIV-negative status.60,61 Mitigation measures to address this barrier could include PrEP positive messaging in communities and health facilities or an HIV prevention option invisible to partners.29,36

Many of our participants described side effects (nausea, vomiting, dizziness, and insomnia), such as has been reported elsewhere.7,62,63 Various strategies have been suggested for counseling PrEP clients on getting through side effects and incorporating pill taking into daily habits.30,54 Those who try and strongly dislike the way PrEP makes them feel may be less likely to reinitiate PrEP than those who discontinued because of other reasons64; these individuals may best be served by other prevention methods.

Choosing an HIV prevention strategy has been referred to as a “preference-sensitive health decision.”36,65 The best prevention option for an individual may vary over time and within different relationship contexts. Important insights for framing PrEP discontinuation rates might be drawn from the field of family planning. Decades of studies on contraceptive use have shown high rates (close to 50% in some countries) of discontinuation due to method dissatisfaction and method switching are common.66–71 Although not everyone who initiates contraceptive use is able to avoid an unplanned pregnancy, studies show that over time improved access to a broad and balanced contraceptive mix is consistently associated with higher levels of contraceptive use.71

Although our participants were encouraged to identify a “primary” reason for discontinuing PrEP, taken in their entirety, participant discontinuation narratives strongly reflected interplay of individual, interpersonal, and contextual factors. Socioecological theory predicts the interdependence of factors within individual, interpersonal, and contextual spheres and emphasizes the necessity of intervention points across them for effective health promotion.72,73 A reduction in barriers at one sphere, eg, contextual factors, may increase individual capacity to mitigate individual and/or interpersonal factors.

We acknowledge several limitations to this study. Our data reflect the experiences of one group of PrEP users, primarily heterosexual individuals willing to initiate PrEP at HIV CCCs in Kenya, and the experiences of other users will not necessarily be the same. However, our study has the advantage of drawing on individuals seeking HIV prevention methods across a continuum of casual to committed sexual relationships. We do not have the total number of those contacted who did not respond to a phone request for an interview, therefore our sample may overly represent empowered individuals with their own cell phones who are confident with articulating autonomous health seeking behavior.

CONCLUSION

Individuals make intentional decisions to discontinue PrEP as they weigh different prevention options and navigate fluid and sometimes challenging relationships. Many clients will decide to discontinue PrEP when perceiving themselves to be at reduced risk and PrEP counseling approaches must include provisions for addressing “seasonal risk.” PrEP will not be the right prevention method for everyone. However, expanding PrEP access points and increasing sex-positive messaging may facilitate PrEP being a better option for many.

REFERENCES

1. Baeten JM, Donnell D, Ndase P, et al. Antiretroviral prophylaxis for HIV prevention in heterosexual men and women. N Engl J Med. 2012;367:399–410.
2. Mugo NR, Ngure K, Kiragu M, et al. The preexposure prophylaxis revolution; from clinical trials to programmatic implementation. Curr Opin HIV AIDS. 2016;11:80–86.
3. Grant RM, Anderson PL, McMahan V, et al. Uptake of pre-exposure prophylaxis, sexual practices, and HIV incidence in men and transgender women who have sex with men: a cohort study. Lancet Infect Dis. 2014;14:820–829.
4. Guideline on when to Start Antiretroviral Therapy and on Pre-exposure Prophylaxis for HIV. Geneva, Switzerland: World Health Organization; 2015.
5. AVAC. Global PrEP Use Landscape as of July 2020. 2020. Available at: https://www.prepwatch.org/.
6. Stankevitz K, Grant H, Lloyd J, et al. Oral pre-exposure prophylaxis (PrEP) continuation, measurement, and reporting: a systematic review and meta-analysis. AIDS. 2020;34:1801–1811.
7. Arnold T, Brinkley-Rubinstein L, Chan PA, et al. Social, structural, behavioral and clinical factors influencing retention in Pre-Exposure Prophylaxis (PrEP) care in Mississippi. PLoS One. 2017;12:e0172354.
8. Pillay D, Stankevitz K, Lanham M, et al. Factors influencing uptake, continuation, and discontinuation of oral PrEP among clients at sex worker and MSM facilities in South Africa. PLoS One. 2020;15:e0228620.
9. Stankevitz K, Grant H, Lloyd J, et al. Oral preexposure prophylaxis continuation, measurement and reporting. AIDS. 2020;34:1801–1811.
10. Nunn AS, Brinkley-Rubinstein L, Oldenburg CE, et al. Defining the HIV pre-exposure prophylaxis care continuum. AIDS (London, England). 2017;31:731–734.
11. Moorhouse L, Schaefer R, Thomas R, et al. Application of the HIV prevention cascade to identify, develop and evaluate interventions to improve use of prevention methods: examples from a study in east Zimbabwe. J Int AIDS Soc. 2019;22(suppl 4):e25309.
12. Schaefer R, Gregson S, Fearon E, et al. HIV prevention cascades: a unifying framework to replicate the successes of treatment cascades. Lancet HIV. 2019;6:e60–e66.
13. Hojilla JC, Vlahov D, Crouch P-C, et al. HIV pre-exposure prophylaxis (PrEP) uptake and retention among men who have sex with men in a community-based sexual health clinic. AIDS Behav. 2018;22:1096–1099.
14. Dunbar MS, Kripke K, Haberer J, et al. Understanding and measuring uptake and coverage of oral pre-exposure prophylaxis delivery among adolescent girls and young women in sub-Saharan Africa. Sex Health. 2018;15:513–521.
15. O'Malley G, Barnabee G, Mugwanya K. Scaling-up PrEP delivery in Sub-Saharan Africa: what can we learn from the scale-up of ART? Curr HIV/AIDS Rep. 2019;16:141–150.
16. Bärnighausen K, Matse S, Hughey AB, et al. “We know this will be hard at the beginning, but better in the long term”: understanding PrEP uptake in the general population in Eswatini. AIDS Care. 2020;32:267–273.
17. Eakle R, Weatherburn P, Bourne A. Understanding user perspectives of and preferences for oral PrEP for HIV prevention in the context of intervention scale-up: a synthesis of evidence from sub-Saharan Africa. J Int AIDS Soc. 2019;22(suppl 4):e25306.
18. Chambers DA, Norton WE. The adaptome: advancing the science of intervention adaptation. Am J Prev Med. 2016;51(4 suppl 2):S124–S131.
19. van der Straten A, Stadler J, Montgomery E, et al. Women's experiences with oral and vaginal pre-exposure prophylaxis: the VOICE-C qualitative study in Johannesburg, South Africa. PLoS One. 2014;9:e89118.
20. Santana MJ, Manalili K, Jolley RJ, et al. How to practice person-centred care: a conceptual framework. Health Expect. 2018;21:429–440.
21. Cremin I, Morales F, Jewell BL, et al. Seasonal PrEP for partners of migrant miners in southern Mozambique: a highly focused PrEP intervention. J Int AIDS Soc. 2015;18(4 suppl 3):19946.
22. Ministry of Health 2016, Nairobi K. Guidelines on Use of Antiretroviral Drugs for Treating and Preventing HIV Infection in Kenya. In: edited by (NASCOP) NASCP. Nairobi, Kenya: Ministry of Health; 2016.
23. Status on Implementation of Oral Pre-exposure Prophylaxis for HIV in Kenya 2018. Nairobi, Kenya: Ministry of Health NASCPN; 2018.
24. Mugwanya KK, Irungu E, Bukusi E, et al. Scale up of PrEP integrated in public health HIV care clinics: a protocol for a stepped-wedge cluster-randomized rollout in Kenya. Implementation Sci. 2018;13:118.
25. Haberer JE, Bangsberg DR, Baeten JM, et al. Defining success with HIV pre-exposure prophylaxis: a prevention-effective adherence paradigm. AIDS. 2015;29:1277–1285.
26. Haberer JE. Current concepts for PrEP adherence in the PrEP revolution: from clinical trials to routine practice. Curr Opin HIV AIDS. 2016;11:10–17.
27. Baeten JM, Heffron R, Kidoguchi L, et al. Integrated delivery of antiretroviral treatment and pre-exposure prophylaxis to HIV-1-Serodiscordant couples: a prospective implementation study in Kenya and Uganda. PLoS Med. 2016;13:e1002099.
28. Ware NC, Pisarski EE, Nakku-Joloba E, et al. Integrated delivery of antiretroviral treatment and pre-exposure prophylaxis to HIV-1 serodiscordant couples in East Africa: a qualitative evaluation study in Uganda. J Int AIDS Soc. 2018;21:e25113.
29. Meyers K, Price D, Golub S. Behavioral and social science research to support accelerated and equitable implementation of long-acting preexposure prophylaxis. Curr Opin HIV AIDS. 2020;15:66–72.
30. Celum CLD-MS, McConnell M, van Rooyen H, et al. Rethinking HIV prevention to prepare for oral PrEP implementation for young African women. J Int AIDS Soc. 2015; 18(4 suppl 3):20227.
31. Seekaew P, Pengnonyang S, Jantarapakde J, et al. Discordance between self-perceived and actual risk of HIV infection among men who have sex with men and transgender women in Thailand: a cross-sectional assessment. J Int AIDS Soc. 2019;22:e25430.
32. Gerrard M, Gibbons FX, Houlihan AE, et al. A dual-process approach to health risk decision making: the prototype willingness model. Dev Rev. 2008;28:29–61.
33. Hofmann W, Friese M, Wiers RW. Impulsive versus reflective influences on health behavior: a theoretical framework and empirical review. Health Psychol Rev. 2008;2:111–137.
34. Houlihan S. Dual-process models of health-related behaviour and cognition: a review of theory. Public Health. 2018;156:52–59.
35. Golub SA, Operario D, Gorbach PM. Pre-exposure prophylaxis state of the science: empirical analogies for research and implementation. Curr HIV/AIDS Rep. 2010;7:201–209.
36. Golub SA. PrEP stigma: implicit and explicit drivers of disparity. Curr HIV/AIDS Rep. 2018;15:190–197.
37. Roberts DA, Barnabas RV, Abuna F, et al. The role of costing in the introduction and scale-up of HIV pre-exposure prophylaxis: evidence from integrating PrEP into routine maternal and child health and family planning clinics in western Kenya. J Int AIDS Soc. 2019;22(suppl 4):e25296.
38. Grant RM, Glidden DV. HIV moments and pre-exposure prophylaxis. Lancet. 2016;387:1507–1508.
39. Whitfield THF, John SA, Rendina HJ, et al. Why I quit pre-exposure prophylaxis (PrEP)? A mixed-method study exploring reasons for PrEP discontinuation and potential Re-initiation among gay and bisexual men. AIDS Behav. 2018;22:3566–3575.
40. Corneli AL, McKenna K, Headley J, et al. A descriptive analysis of perceptions of HIV risk and worry about acquiring HIV among FEM-PrEP participants who seroconverted in Bondo, Kenya, and Pretoria, South Africa. J Int AIDS Soc. 2014;17(3 suppl 2):19152.
41. Wanga V, Baeten JM, Bukusi EA, et al. Sexual behavior and perceived HIV risk among HIV-negative members of serodiscordant couples in East Africa. AIDS Behav. 2020;24:2082–2090.
42. Entwistle VA, Carter SM, Cribb A, et al. Supporting patient autonomy: the importance of clinician-patient relationships. J Gen Intern Med. 2010;25:741–745.
43. Lee YY, Lin JL. Do patient autonomy preferences matter? Linking patient-centered care to patient-physician relationships and health outcomes. Soc Sci Med. 2010;71:1811–1818.
44. Greene SM, Tuzzio L, Cherkin D. A framework for making patient-centered care front and center. Perm J. 2012;16:49–53.
45. Maloney KM, Krakower DS, Ziobro D, et al. Culturally competent sexual healthcare as a prerequisite for obtaining preexposure prophylaxis: findings from a qualitative study. LGBT Health. 2017;4:310–314.
46. Pyra M, Rusie LK, Baker KK, et al. Correlations of HIV preexposure prophylaxis indications and uptake, chicago, Illinois, 2015-2018. Am J Public Health. 2020;110:370–377.
47. Sun CJ, Anderson KM, Bangsberg D, et al. Access to HIV pre-exposure prophylaxis in practice settings: a qualitative study of sexual and gender minority adults' perspectives. J Gen Intern Med. 2019;34:535–543.
48. Cosme D, Berkman ET. Autonomy can support affect regulation during illness and in health. J Health Psychol. 2020;25:31–37.
49. Morgan E, Ryan DT, Newcomb ME, et al. High rate of discontinuation may diminish PrEP coverage among young men who have sex with men. AIDS Behav. 2018;22:3645–3648.
50. Gilbert HN, Wyatt MA, Pisarski EE, et al. PrEP discontinuation and prevention-effective adherence: experiences of PrEP users in Ugandan HIV serodiscordant couples. J Acquir Immune Defic Syndr. 2019;82:265–274.
51. Pinto RM, Lacombe-Duncan A, Kay ES, et al. Expanding knowledge about implementation of pre-exposure prophylaxis (PrEP): a methodological review. AIDS Behav. 2019;23:2761–2778.
52. Velloza J, Khoza N, Scorgie F, et al. The influence of HIV-related stigma on PrEP disclosure and adherence among adolescent girls and young women in HPTN 082: a qualitative study. J Int AIDS Soc. 2020;23:e25463.
53. Emmanuel G, Folayan M, Undelikwe G, et al. Community perspectives on barriers and challenges to HIV pre-exposure prophylaxis access by men who have sex with men and female sex workers access in Nigeria. BMC Public Health. 2020;20:69.
54. Van der Elst EM, Mbogua J, Operario D, et al. High acceptability of HIV pre-exposure prophylaxis but challenges in adherence and use: qualitative insights from a phase I trial of intermittent and daily PrEP in at-risk populations in Kenya. AIDS Behav. 2013;17:2162–2172.
55. Rivet Amico K, Bekker LG. Global PrEP roll-out: recommendations for programmatic success. Lancet HIV. 2019;6:e137–e140.
56. Patel SN, Wingood GM, Kosambiya JK, et al. Individual and interpersonal characteristics that influence male-dominated sexual decision-making and inconsistent condom use among married HIV serodiscordant couples in Gujarat, India: results from the positive Jeevan Saathi study. AIDS Behav. 2014;18:1970–1980.
57. Patel RC, Leddy AM, Odoyo J, et al. What motivates serodiscordant couples to prevent HIV transmission within their relationships: findings from a PrEP implementation study in Kenya. Cult Health Sex. 2018;20:625–639.
58. Nakku-Joloba E, Pisarski EE, Wyatt MA, et al. Beyond HIV prevention: everyday life priorities and demand for PrEP among Ugandan HIV serodiscordant couples. J Int AIDS Soc. 2019;22:e25225.
59. Ware NC, Wyatt MA, Haberer JE, et al. What's love got to do with it? Explaining adherence to oral antiretroviral pre-exposure prophylaxis for HIV-serodiscordant couples. J Acquir Immune Defic Syndr. 2012;59:463–468.
60. Cabral A, Baeten M J, Ngure K, et al. Intimate partner violence and self-reported pre-exposure prophylaxis interruptions among HIV-negative partners in HIV serodiscordant couples in Kenya and Uganda. J Acquir Immune Defic Syndr. 2018; 77:154–159.
61. Carroll JJ, Ngure K, Heffron R, et al. Gendered differences in the perceived risks and benefits of oral PrEP among HIV-serodiscordant couples in Kenya. AIDS Care. 2016;28:1000–1006.
62. Mugwanya KK, Pintye J, Kinuthia J, et al. Integrating preexposure prophylaxis delivery in routine family planning clinics: a feasibility programmatic evaluation in Kenya. PLoS Med. 2019;16:e1002885.
63. Bärnighausen K, Geldsetzer P, Matse S, et al. Qualitative accounts of PrEP discontinuation from the general population in Eswatini. Cult Health Sex. 2020:1–17.
64. Bärnighausen KE, Matse S, Kennedy CE, et al. “This is mine, this is for me”: preexposure prophylaxis as a source of resilience among women in Eswatini. AIDS. 2019;33:S45–S52.
65. Irungu EM, Ngure K, Mugwanya KK, et al. “Now that PrEP is reducing the risk of transmission of HIV, why then do you still insist that we use condoms?” the condom quandary among PrEP users and health care providers in Kenya. AIDS Care. 2021;33:92–100.
66. Moreau C, Cleland K, Trussell J. Contraceptive discontinuation attributed to method dissatisfaction in the United States. Contraception. 2007;76:267–272.
67. Ali MM, Cleland J, Shah IH. Causes and Consequences of Contraceptive Discontinuation: Evidence from 60 Demographic and Health Surveys. Geneva, Switzerland: Organization WH; 2012.
68. Delany-Moretlwe S, Mullick S, Eakle R, et al. Planning for HIV preexposure prophylaxis introduction: lessons learned from contraception. Curr Opin HIV AIDS. 2016;11:87–93.
69. Crosignani PG, Glasier A. Family planning 2011: better use of existing methods, new strategies and more informed choices for female contraception. Hum Reprod Update. 2012;18:670–681.
70. Sitruk-Ware R, Nath A, Mishell DR Jr. Contraception technology: past, present and future. Contraception. 2013;87:319–330.
71. Ross J, Hardee K. Access to contraceptive methods and prevalence of use. J Biosoc Sci. 2013;45:761–778.
72. Bronfenbrenner U. The Ecology of Human Development. Cambridge, MA: Harvard Universtiy Press; 1979.
73. Kaufman MR, Cornish F, Zimmerman RS, et al. Health behavior change models for HIV prevention and AIDS care: practical recommendations for a multi-level approach. J Acquir Immune Defic Syndr. 2014;66(suppl 3):S250–S258.
Keywords:

PrEP; discontinuation; HIV prevention; qualitative research; serodifferent

Copyright © 2021 The Author(s). Published by Wolters Kluwer Health, Inc.