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Management Recommendations > Adherence and Retention

Ward 86 Management Recommendations

Antiretroviral Medication Adherence and Retention in Care

updated November 2018

Contributors: Elizabeth Imbert, MD
Janet Grochowski, PharmD
Katerina Christopolous, MD

Medication adherence and retention in care are critical to the successful treatment of HIV. There has been extensive research on how to maximize adherence to antiretroviral therapy (ART) and retention in medical care, and guidelines addressing these topics have been published.(1)

Approaching medication adherence

We strongly recommend a collaborative approach in which the patient is closely involved in selecting an antiretroviral (ARV) regimen.

  1. Before collaboratively choosing a regimen, providers should assess what HIV antiretroviral drugs are expected to be fully effective against the patient's virus, have a good safety profile, and be convenient for the patient. The regimens offered should be evidence based (see the guidelines on Initial Combination Regimens for the Antiretroviral-Naive Patient.
  2. Then, elicit the patient's preferences, expectations, beliefs, worries, and concerns about medications, and assess for individual, social, and structural barriers to adherence.
  3. Discuss pill size, pill number, dosing frequency, and possible side effects. Lower pill burden and once-daily regimens are associated with improved adherence.(2,3) Encourage patients to let you know if they experience side effects or other challenges to adherence.
  4. At each primary care visit, we recommend that providers reconfirm the ARV regimen with the patient, take a careful nonjudgmental history regarding adherence, and specifically ask if the patient has experienced side effects or other challenges to adherence.

Nonadherence may have various etiologies, and there are many strategies for addressing nonadherence.(4) We recommend the following:

  1. Simplifying therapy to one or two pills taken at the same time once daily, using combination, single-pill formulations whenever possible.
  2. Asking pharmacies (ideally HIV-specialized pharmacies) to package medications in bubble packs, medisets, or wellness packs to prevent dosing mistakes. This strategy has been associated with improved adherence and persistence.(5)
  3. Linking medication self-administration to existing routines and using cues or reminder aids.
  4. Asking patients at each visit whether they are having side effects or otherwise struggling to take their ARVs consistently. If so, strongly consider switching to one of the alternative optimal regimens that should be effective, based on the patient's HIV genotype and treatment history (see the guidelines).
  5. If the barrier to nonadherence is mental illness, substance abuse, or homelessness, we refer patients to a social worker to address these barriers and link them to community-based resources.
  6. If the housing situation is very unstable or there are other issues that make it hard for patients to pick up medications every month, or to keep them in their possession throughout the month, we dispense the medications weekly from the clinic.
  7. We have a clinic-based HIV specialist pharmacist who meets with patients to review their medications, support their adherence, dispense medications when indicated and monitor adherence, communicate with pharmacies to facilitate refills and arrange mediset or bubble-pack supplies for patients when appropriate, submit prior authorizations when required, and interface with primary providers regarding adherence issues. Such specialist support has been associated with improved adherence and positive impacts on viral suppression.(6)

Improving retention in care

Retention in care is associated with improved viral suppression (particularly among patients with low absolute CD4 counts), larger increases in CD4 count, and better survival rates.(7,8) Retention in care is not an "all or nothing" situation. Patients often cycle in and out of care.(9) Common barriers reported by those not retained in care include competing priorities such as work and child care, expensive or unreliable transportation, stigma, and insufficient insurance coverage.(10) The following sociodemographic characteristics also have been associated with poor retention in care: younger age, female gender, heterosexual orientation, African American race, stimulant and alcohol use, HIV-related stigma, and low level of social support.(11) Structural and clinic factors associated with poor retention in care include homelessness, lack of insurance or inability to cover copay, and a poor patient-provider relationship.

For patients who have such barriers or risk factors for poor retention in care, we engage community case worker support. Evidence from a randomized, multicenter, CDC-sponsored trial conducted at 6 HIV clinics in the United States demonstrates that enhanced contact with an interventionist (in this study, someone trained in communications skills who subsequently established a personal relationship in a face-to-face meeting with the patients and remained in continuous contact with them during the study period), including brief face-to-face meetings at clinic visits, interim visit calls, appointment reminder calls, and missed visit calls, can improve retention in HIV primary care.(12) Another CDC-sponsored randomized trial showed that a brief period of case manager-facilitated patient navigation during the first 90 days after linkage to care resulted in significantly improved retention at 1 year.(13)

The CDC has developed a program, Data to Care, as a strategy for reengaging HIV-infected individuals in medical care by using HIV surveillance data routinely collected by state and local health departments to track patients lost to follow-up and reengage them in care. Health departments are using this method with the assistance of surveillance staff and patient navigators to identify and reengage such patients.(14,15) More information is available at the Data to Care website. Electronic medical record prompts and alerts also may be used to improve retention and are another emerging area of interest for research in this aspect of health care.(16,17)

To maximize retention in care, we recommend developing a care model in which social and financial barriers are addressed, mental health and substance abuse services are integrated into clicical care, and all these services are made as patient-friendly as possible.(10)

Specific strategies we have found that enhance retention in our HIV clinic include:

  • Sending appointment reminders via call and text.
  • Following-up on an appointment no-show as soon as possible after the missed visit.
  • Having a live person answer the clinic phone to reschedule appointments as opposed to directing patients to an automated phone tree.
  • Tracking patients who are lost to care and working with public health surveillance to understand whether they have established care elsewhere or would benefit from public health-sponsored navigation to reengage in care.
  • Informing patients when they first engage in care that, in the beginning, they may need to be seen frequently but, once they are vorogically suppressed and stabilized, intervals between appointments may be extended. We generally try to set the expectation for stabilized patients to have follow-up appointments occur at a minimum of 6-month intervals, and more frequently if there are comorbid issues such as recurrent STDs or active mental health or substance abuse problems.
  • Arranging intensive community-based case management for patients who are unable to sustain engagement in care.
  • Having a social worker as an integral health care team member who can liaise with case managers.
  • Having an easily accessible member of our team ensure that patients' insurance coverage is adequate.
  • Maintaining provider capacity to see drop-in patients with urgent complaints during clinic hours.
  • Sending patients targeted messages about the importance of staying in care. There is evidence that this practice is associated with improved retention.(18)

We also recommend revisiting retention strategies with patients on a regular basis to address their changing perspectives on HIV, their comfort level with being open with others as a person living with HIV, and the role providers can play in helping patients to continue to be engaged in care.(19) For example, although a patient's desire to address physical concerns may be the initial motivator for engagement in care, a lack of psychological or social support may cause that individual to drop out of care at a later point in time. Moreover, unexpected life events, such as the loss of a job or the death of a family member, can trigger disruptions in care. Engagement in care is a lifelong process and the supports needed at particular points in time may change.


  1. Thompson MA, Mugavero MJ, Amico KR, et al. Guidelines for improving entry into and retention in care and antiretroviral adherence for persons with HIV: evidence-based recommendations from an International Association of Physicians in AIDS Care panel. Ann Intern Med. 2012 Jun 5;156:817-33.
  2. Nachega JB, Parienti JJ, Uthman OA, et al. Lower pill burden and once-daily antiretroviral treatment regimens for HIV infection: a meta-analysis of randomized controlled trials. Clin Infect Dis. 2014 May;58(9):1297-307.
  3. Cohen CJ, Meyers JL, Davis KL. Association between daily antiretroviral pill burden and treatment adherence, hospitalisation risk, and other healthcare utilisation and costs in a US medicaid population with HIV. BMJ Open. 2013 Aug 1;3(8).
  4. Hanyok L, Brandt L, Christmas C, et al. The Johns Hopkins Aliki initiative: a patient-centered curriculum for internal medicine residents. MedEdPORTAL Publications. 2012;8:9098.
  5. Murphy P, Cocohoba J, Tang A, et al. Impact of HIV-specialized pharmacies on adherence and persistence with antiretroviral therapy. AIDS Patient Care STDS. 2012 Sep;26(9):526-31.
  6. Saberi P, Dong BJ, Johnson MO, et al. The impact of HIV clinical pharmacists on HIV treatment outcomes: a systematic review. Patient Prefer Adherence. 2012;6:297-322.
  7. Yehia BR, French B, Fleishman JA, et al; HIV Research Network. Retention in care is more strongly associated with viral suppression in HIV-infected patients with lower versus higher CD4 counts. J Acquir Immune Defic Syndr. 2014 Mar 1;65(3):333-9.
  8. Tripathi A, Youmans E, Gibson, et al. The impact of retention in early HIV medical care on viro-immunological parameters and survival: a statewide study. AIDS Res Hum Retroviruses. 2011 Jul;27(7):751-8.
  9. Rajabiun S, Mallinson RK, McCoy K, et al. ?Getting me back on track?: the role of outreach interventions in engaging and retaining people living with HIV/AIDS in medical care. AIDS Patient Care STDS. 2007;21 Suppl 1:S20-9.
  10. Yehia BR, Stewart L, Momplaisir F, et al. Barriers and facilitators to patient retention in HIV care. BMC Infect Dis. 2015 Jun 28;15:246.
  11. Cohen JK, Santos GM, Moss NJ, et al. Regular clinic attendance in two large San Francisco HIV primary care settings. AIDS Care. 2016;28(5):579-84.
  12. Gardner LI, Giordano TP, Marks G, et al; Retention in Care Study Group. Enhanced Personal Contact with HIV Patients Improves Retention in Primary Care: A Randomized Trial in 6 US HIV Clinics. Clin Infect Dis. 2014 Sep 1;59(5):725-34.
  13. Gardner LI, Metsch LR, Anderson-Mahoney P, et al; Antiretroviral Treatment and Access Study Study Group. Efficacy of a brief case management intervention to link recently diagnosed HIV-infected persons to care. AIDS. 2005 Mar 4;19(4):423-31.
  14. Udeagu CC, Webster TR, Bocour A, et al. Lost or just not following up: public health effort to re-engage HIV-infected persons lost to follow-up into HIV medical care. AIDS. 2013 Sep 10;27(14):2271-9.
  15. Buskin SE, Kent JB, Dombrowski JC, et al. Migration distorts surveillance estimates of engagement in care: results of public health investigations of persons who appear to be out of HIV care. Sex Transm Dis. 2014 Jan;41(1):35-40.
  16. Robbins GK, Lester W, Johnson KL, et al. Efficacy of a clinical decision-support system in an HIV practice: a randomized trial. Ann Intern Med. 2012;157:757-66.
  17. Herwehe J, Wilbright W, Abrams A, et al. Implementation of an innovative, integrated electronic medical record (EMR) and public health information exchange for HIV/AIDS. J Am Med Inform Assoc. 2012;19:448-52.
  18. Gardner LI, Marks G, Craw JA, et al; Retention in Care Study Group. A low-effort, clinic-wide intervention improves attendance for HIV primary care. Clin Infect Dis. 2012 Oct;55(8):1124-34.
  19. Christopoulos KA, Massey AD, Lopez AM, et al. "Taking a Half Day at a Time:" Patient Perspectives and the HIV Engagement in Care Continuum. AIDS Patient Care STDS. 2013 Apr;27(4):223-30.