Supporting Adherence and Persistence
Initiation of PrEP is only the first step toward an effective HIV prevention strategy. Learn more about the research behind strategies for supporting PrEP adherence and sustainment, as well as ways to mitigate against logistical, structural, financial, or other barriers.
WHAT WE KNOW
from the literature
1.Decreasing patient discomfort–both physical and emotional–can improve adherence and retention in care.
- This paper demonstrates how patients’ concern for long-term consequences of PrEP use can impact their medication adherence.
- These papers present evidence on reasons for discontinuing PrEP and find that undesirable side effects are often primary or contributing factors.
- Whitfield THF, John SA, Rendina HJ, Grov C, Parsons JT. 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 Nov;22(11):3566-3575.
- Chan PA, Mena L, Patel R, Oldenburg CE, Beauchamps L, Perez-Brumer AG, Parker S, Mayer KH, Mimiaga MJ, Nunn A. Retention in care outcomes for HIV pre-exposure prophylaxis implementation programmes among men who have sex with men in three US cities. J Int AIDS Soc. 2016 Jun 13;19(1):20903.
- This conference presentation describes the anxiety or stress that could accompany the unintended disclosure of PrEP use and potentially interfere with adherence.
- This paper underscores the ways in which contextual cues in healthcare settings can signal safety for marginalized groups and contribute to a sense of trust between patients and providers; when these cues are present, they contribute to improved adherence to medical counseling.
2. Taking time to explain why patients should follow care plans significantly increases the likelihood that they will do so.
- Applying lessons learned from other medications, these papers suggest that medication adherence is strongly associated with patients’ understanding of drug information, especially at initiation.
- Rosenberg MJ, Waugh MS, Meehan TE. Use and misuse of oral contraceptives: risk indicators for poor pill taking and discontinuation. Contraception. May 1995;51(5):283-288.
- Watson-Jones D, Weiss HA, Rusizoka M, et al. Effect of herpes simplex suppression on incidence of HIV among women in Tanzania. N Engl J Med. Apr 10 2008;358(15):1560-1571.
3. Patients need information, tools and strategies for integrating HIV prevention into their everyday lives.
- This paper finds that the best strategy for prescribing PrEP is one in which the provider contributes medical expertise, and the patient contributes expertise on their behavioral history, goals, and logistical ability to integrate PrEP into their daily life.
- This paper demonstrates that integrating oral contraception pill-taking into a regular routine was the strongest single factor associated with adherence.
- This paper highlights the reasons that participants gave for adhering to PrEP medication and found that routine formation and use of tools was a facilitator of adherence.
4.Self-efficacy is a critical predictor of PrEP adherence and persistence.
- This paper demonstrates the impact on self-efficacy for facilitating HIV treatment adherence that could be applied to PrEP implementation efforts.
- These papers emphasize the importance of self-efficacy in PrEP medication adherence on PrEP uptake and demonstrate that PrEP adherence self-efficacy may impact patients’ decision-making around PrEP, including for young black men.
- Golub SA, Fikslin RA, Goldberg MH, Peña SM, Radix A. Predictors of PrEP Uptake Among Patients with Equivalent Access. AIDS Behav. 2019 Jul;23(7):1917-1924.
- Serota DP, Rosenberg ES, Sullivan PS, Thorne AL, Rolle CM, Del Rio C, Cutro S, Luisi N, Siegler AJ, Sanchez TH, Kelley CF. Pre-exposure Prophylaxis Uptake and Discontinuation Among Young Black Men Who Have Sex With Men in Atlanta, Georgia: A Prospective Cohort Study. Clin Infect Dis. 2020 Jul 27;71(3):574-582.
- This conference presentation highlights that the strongest predictor at each step of the PrEP cascade (i.e., acceptance of navigation and referral, PrEP initiation, and sustained PrEP use) was a personal PrEP efficacy scale that include measures on positive attitudes toward PrEP pills, self-efficacy for pill-taking, and confidence in PrEP’s ability to work “for me.”
5.Logistical and structural barriers can hinder adherence and persistence on PrEP.
- These papers are a few of the many that document the logistical and structural challenges that have presented barriers to PrEP access, adherence, and persistence, such as the high price of medication, inadequate insurance coverage, location of PrEP access points, and lack of flexible clinic hours.
- Golub SA, Gamarel KE, Rendina HJ, Surace A, Lelutiu-Weinberger CL. From efficacy to effectiveness: facilitators and barriers to PrEP acceptability and motivations for adherence among MSM and transgender women in New York City. AIDS Patient Care STDS. 2013 Apr;27(4):248-54.
- Arnold T, Brinkley-Rubinstein L, Chan PA, Perez-Brumer A, Bologna ES, Beauchamps L, Johnson K, Mena L, Nunn A. Social, structural, behavioral and clinical factors influencing retention in Pre-Exposure Prophylaxis (PrEP) care in Mississippi. PLoS One. 2017 Feb 21;12(2):e0172354.
- Whitfield THF, John SA, Rendina HJ, Grov C, Parsons JT. 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 Nov;22(11):3566-3575.
- These papers demonstrate that structural and logistical barriers significantly impact communities that have been prioritized for HIV prevention, such as Black and Latino MSM and transgender women and people living in the Southern U.S.
- Nieto O, Brooks RA, Landrian A, Cabral A, Fehrenbacher AE. PrEP discontinuation among Latino/a and Black MSM and transgender women: A need for PrEP support services. PLoS One. 2020 Nov 5;15(11):e0241340.
- Sullivan PS, Mena L, Elopre L, Siegler AJ. Implementation Strategies to Increase PrEP Uptake in the South. Curr HIV/AIDS Rep. 2019 Aug;16(4):259-269.
WHAT IT MEANS
for policies and programs
Patients appreciate understanding how PrEP works and why adherence matters.
Giving PrEP users a clear message about the scientific evidence behind adherence to PrEP is critical, whether patients are following a daily regimen or an event-driven/ 2-1-1 dosing strategy.
Embrace positive messaging.
In contrast to focusing on risk, data suggest the importance of messaging and counseling that enhances self-efficacy beliefs around PrEP use. Providers can help build patients’ confidence in seeing PrEP as an HIV prevention strategy that will work for them.
Context matters.
Sustained adherence to PrEP regimens will be possible only to the extent that patients are able to incorporate PrEP into their everyday lives. Providers can support patients in building routines that will integrate PrEP into their daily life and developing strategies for when that routine is disrupted.
Side effects aren’t a side issue for patients.
Uncomfortable side effects, such as nausea and diarrhea, can dissuade patients from initiating, adhering to, and remaining on PrEP. It is critical that patients are informed of potential side effects, strategies to minimized side effects, and are supported in stopping PrEP if they do experience intolerable side effects. At PrEP initiation, providers can help patients think through which side effects they are and are not willing to tolerate and develop specific action plans if intolerable side effects occur.
Disclosure happens.
Planned or unplanned disclosure of one’s PrEP use happens, and providers can help decrease patient discomfort (and therefore enhance adherence and sustainment) by facilitating strategies to address disclosure. Patients may want assistance considering to whom and in what contexts they would disclose their PrEP use and how they would respond to an accidental disclosure.
New PrEP modalities may be a game-changer.
As more PrEP modalities become available (i.e., long-acting injectables, vaginal rings, etc.), barriers to adherence and sustainment will need to be integrated into decision-making counseling. Providers should help patients consider the different side effect profiles, disclosure concerns, and contexts that may affect HIV prevention method selection. Additionally, novel modalities will introduce new challenges to adherence and sustainment that will require new support strategies. For example, medication adherence strategies may need to expand to support study visit adherence; planning responses to disclosure may need to include responses to a partner feeling the vaginal ring.
BLUPrInt TOOLS
for this topic area
Resources and tools in these sections of the PrEP Program Builder are informed by and reflect the lessons in this key topic…