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Adherence to the Continuum of Care

In 2017, the US Department of Health and Human Services Guidelines for the Use of Antiretroviral Agents in Adults and Adolescents Living with HIV revised and renamed the Adherence to Antiretroviral Therapy section to expand the discussion of adherence beyond treatment.1 The new section—Adherence to the Continuum of Care—considers a range of steps including HIV testing, linkage to care, initiation of antiretroviral therapy (ART), adherence to treatment, retention in care, and virologic suppression, and encourages collaboration among healthcare professionals and multidisciplinary care teams to better understand challenges at each step to help keep patients engaged in care.


The HIV care continuum—which includes various care touch points between HIV diagnoses and successful treatment—illustrates gaps in testing, linkage to care, retention in care, and virologic suppression.3, 4 CDC uses two methods to measure US progress: the prevalence-based HIV care continuum, which shows each step as a percentage of the total number of people living with HIV, and the diagnosis-based continuum, which shows each step as a percentage of the number of people diagnosed with HIV. The first is better for looking at broad populations, while the second is more useful in analyzing subgroups or local data.


Viral suppression is the end goal on the continuum for individual and public health.1, 5 While progress is being made—overall suppression rates rose from 28% to 49% between 2010 and
2014—outcomes still vary by age group, sex, race, geographic region, and HIV risk factors. Young adults and adolescents aged 13-24 years, for example, are less likely to be diagnosed, linked to care, or retained in care, and consequently have the lowest rate of viral suppression.

Continued efforts are needed from healthcare providers and other professionals throughout the healthcare system to ensure all patient types are linked quickly to HIV care and sustained in care to improve viral suppression rates across the board.1, 5


Linkage to Care

Linking newly diagnosed patients to care—or helping them complete an appointment with a healthcare professional who treats people living with HIV and can prescribe ART—should occur as soon as possible, preferably within 30 days.1 Every effort should be made to work with patients in a sensitive yet persistent manner, as they may be struggling with their new diagnosis and/or other common barriers at this stage of care. Active linkage—setting up appointments for patients, following up with patients until appointments are complete, and providing appropriate case management services—has been shown to improve linkage to care.

Common barriers at this stage of the continuum include1:

Substance use

Mental health issues

Financial insecurity

Stigma/fear of disclosure

Disease severity: asymptomatic

Strategies to improve linkage1:

Active linkage: immediate appointment scheduling, reminders, and follow-up

Co-location of testing and treatment services

Ongoing case management and outreach efforts

Antiretroviral Treatment and Access to Services (ARTAS) intervention

Post-test counseling and education about living with HIV

Peer support


Monitoring patients through the linkage process is critical, and it's one area where care networks can work together to ensure patient success, or intervene when obstacles arise.1 When patients are diagnosed outside of HIV treatment centers, for example, the diagnosing entity can follow up with patients until they're connected to proper HIV care, while the treating entity can share responsibility once contact is made.


Retention and Re-engagement

Once patients are linked to care, the focus shifts to keeping them in care, as poor retention is associated with poor HIV outcomes.1 Healthcare providers along with nurses and clinic staff play a role in optimizing the patient experience during each clinic visit and helping patients problem-solve for ways to remain in care.

Common barriers at this stage of the continuum include1:

Substance use

Mental health problems

Stigma/fear of disclosure


Socioeconomic needs (housing, transportation, food)

Financial insecurity or lack of insurance

Scheduling convenience, availability and timeliness of appointments

Low trust or low satisfaction with providers or clinics

Strategies to improve retention1:

Providing a positive patient experience

Expanded clinic hours

Flexible appointment scheduling

Appointment reminders

Clinic-wide promotion of keeping scheduled appointments

Rescheduling of missed appointments

Nonjudgmental, problem-solving approach to improve attendance

Case management and outreach services

Financial and insurance assistance

Opioid replacement therapy for opioid users


Efforts can also be made to re-engage out-of-care patients by implementing a "Data to Care" approach, which uses clinic and public health data to identify at-risk patients.1 One such effort published on the Centers for Disease Control and Prevention website is the evidence-based intervention Clinic-Based Surveillance-Informed Patient Retracing.6 In this study of 1399 clinic participants who met criteria for re-engagement, not only were the intervention cohort patients relinked more quickly to HIV care with the assistance of a linkage specialist, significantly greater percentages were relinked and retained in continuous HIV care for 12 months.


Adherence to ART

The goal of ART is to protect individual and public health via virologic suppression, which depends on long-term ART adherence.1 Yet, ART adherence challenges remain for many patients due to factors such as patients' social or clinical standing, prescribed regimen, and poor patient-provider rapport.

Common barriers to ART adherence include1:

Low health literacy

Lack of support systems

Stressful life events

Busy/unstructured daily routines

Substance use

Mental health issues


Financial insecurity or lack of insurance

Stigma/fear of disclosure

Pill burden

Side effects or toxicities

Strategies to improve ART adherence1:

Patient-provider rapport built on trust and clear communication

Clinical settings that provide patients with multidisciplinary support—case managers, pharmacists, social workers, mental health and substance abuse counselors—to support varying patient needs

Patient comprehension of treatment goals and the need for strict adherence

Identification of adherence barriers and multidisciplinary plans to address them

Patient involvement in the development of a personalized treatment plan to which they can commit to for the long haul

Financial assistance and insurance support

Medication reminder aids, such as text messaging, alarms, and pill box monitors

Positive reinforcement


Treatment adherence involves multiple stages, including linkage to and retention in care and adherence to ART.1 Adopting this expanded concept of adherence helps identify widespread challenges across the care continuum. Tailoring individual approaches to address barriers to treatment and care requires the collaboration of multidisciplinary forces—HIV clinicians, nurses, clinic staff, case managers, social workers, counselors, pharmacists, and more. Each has an opportunity to engage patients who are struggling with adherence in constructive, nonjudgmental ways, to help them identify and understand their own challenges, and to connect them to available resources to overcome these challenges.

Use the resource below to help drive adherence to the continuum of care in your practice.

Download data slide decks at HIVContinuum.org to connect with complex information about the HIV care continuum in several highly impacted US cities.7

Download Slide Decks


1. Guidelines for the use of antiretroviral agents in adults and adolescents with HIV. AIDSinfo website. https://aidsinfo.nih.gov/guidelines/html/1/adult-and-adolescent-arv/0. Published October 25, 2018. Accessed May 21, 2019.

2. Centers for Disease Control and Prevention. Monitoring selected national HIV prevention and care objectives by using HIV surveillance data—United States and 6 dependent areas, 2015. HIV Surveillance Supplemental Report 2017;22(No. 2). http://www.cdc.gov/hiv/library/reports/hiv-surveillance.html. Published July 2017. Accessed May 21, 2019.

3. HIV continuum of care, U.S., 2014, overall and by age, race/ethnicity, transmission route and sex. NCHHSTP Newsroom. Centers for Disease Control and Prevention website. https://www.cdc.gov/nchhstp/newsroom/2017/HIV-Continuum-of-Care.html. Published July 27, 2017. Accessed May 21, 2019.

4. Understanding the HIV care continuum. Centers for Disease Control and Prevention website. https://www.cdc.gov/hiv/pdf/library/factsheets/cdc-hiv-care-continuum.pdf. Published July 2017. Accessed May 21, 2019.

5. More people with HIV have the virus under control. NCHHSTP Newsroom. Centers for Disease Control and Prevention website. https://www.cdc.gov/nchhstp/newsroom/2017/2017-HIV-Continuum-Press-Release.html. Published July 27, 2017. Accessed May 21, 2019.

6. Clinic-based surveillance-informed patient retracing. The Centers for Disease Control and Prevention website. https://www.cdc.gov/hiv/pdf/research/interventionresearch/compendium/lrc/cdc-hiv-Clinic-Based_Surveillance-Informed_Patient_Retracing_LRC_EI_Retention.pdf. Published April 27, 2016. Accessed May 21, 2019.

7. Mapping the HIV care continuum. HIVContinuum.org website. Accessed May 21, 2019.

HVUWCNT190026 August 2019

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