Following a positive HIV test, a client needs to be linked to an HIV clinician for guidance on care and treatment. The International Panel on HIV Care Continuum Optimization recommends ‘immediate referral to HIV care following an HIV-positive diagnosis to improve linkage to antiretroviral therapy (ART).1 Early linkage to care can optimize outcomes, including individual (e.g., improved health) and public health outcomes (e.g., reduced transmission of the virus).1
This evidence review outlines findings on HIV linkage to care programs, focusing on the following topics:
- rates and barriers to successful linkage to care
- program elements that support optimal linkage to care
- programs for linkage to care
Further details of the methodology used for the literature review are available near the end of the article.
What are the findings of the evidence review?
Successful linkage to care is largely defined in research as a client attending an appointment with an HIV clinician within three months of HIV diagnosis. The available research evidence on linkage to care programs, which comes predominantly from studies in high-income settings, can be summarized as follows:
- There is strong evidence to support the effectiveness of short-term strengths-based case management, and specifically the Antiretroviral Treatment Access Study (ARTAS) intervention, for successful linkage to care.
- There is moderate evidence to support the use of counsellors or linkage to care coordinators for successful linkage to care.
- There is no evidence to support the effectiveness of financial incentives for successful linkage to care.
- There is limited evidence to support the effectiveness of intensive interventions (use of in-person individualized support from a counsellor/coordinator) to ensure linkage to care following diagnosis in an emergency department.
Why is linkage to care important to the HIV cascade of care?
Some people with HIV need support to link to and remain engaged in HIV care and treatment to realize the benefits of care. The concept of the HIV treatment cascade (also known as the continuum of care) is one way to determine how well the system is doing to engage and keep people in care and on successful treatment. The cascade is based on the successive steps that are needed for a person with HIV to achieve and maintain an undetectable viral load. Treatment for HIV improves not only health but also quality of life, and timely linkage to care can promote health outcomes. Additionally, maintaining an undetectable viral load plays a key role in the prevention of HIV transmission.
Linkage to care is an important component of the cascade in that it can help people diagnosed with HIV become engaged in HIV care, thereby increasing the likelihood that they will initiate treatment and eventually achieve viral load suppression. Linkage to care programs can help to overcome the barriers that limit a client’s ability to connect to a healthcare provider following a diagnosis of HIV.
The Public Health Agency of Canada estimates there were 63,110 HIV-positive people in Canada in 2016. The stages of engagement across the treatment cascade are as follows:
- 86% of people with HIV know their status
- 81% of people diagnosed with HIV are taking ART
- 91% of people taking ART have an undetectable viral load
As a result, it is estimated that 63% of all people in Canada with HIV have an undetectable viral load.2 There is room for improvement in Canada within the treatment cascade.
The goal of linkage to care is the successful initiation of HIV clinical care. The act of successfully linking someone to care after an HIV diagnosis is a time-limited task.
What time frame is optimal for linkage to care?
Successful linkage to care does not have a consistent definition across available guidelines and research literature.
In terms of guidelines, the International Association of Physicians in AIDS Care recommends immediate referral to HIV care following an HIV-positive diagnosis to improve linkage to ART.1 In the United States, the National HIV/AIDS Strategy updated the definition of successful linkage in 2015 to having an initial visit with a clinical HIV care provider within one month (30 days) of HIV diagnosis (previously three months or 90 days).3
While guidelines recommend immediate referral to HIV care following an HIV-positive diagnosis, the research literature has defined successful linkage to care as care initiated anywhere from one to 12 months following an HIV diagnosis, with the majority of the research studies using three months or 90 days as an indicator of successful linkage to care.4 There has been research demonstrating that people who have shorter linkage periods (that is, within one month or 30 days) have better outcomes including faster viral load suppression.5 Differences in the measure of successful linkage to care in research studies probably relate to study publication date, with newer studies adopting the time frame of three months or less, as reflected in the current review.
Rates of and barriers to successful linkage to care
Available evidence suggests that linkage to care within three months occurs for the majority of people newly diagnosed with HIV (approximately 82% to 85%).
- Canadian data from Ontario indicate that 82% of people newly diagnosed with HIV were linked to care within three months in 2013.6
- A systematic review of linkage to care across 19 European countries found that the pooled estimate of linkage to care within three months of diagnosis across the studies included was 85%.7
- In the United States, it was estimated that 84% of people diagnosed with HIV in 2015 were linked to care within three months of diagnosis.8
However, research suggests that certain people are less likely to be optimally engaged in care after their diagnosis. Two reviews, one systematic4 and one non-systematic,9 and additional single studies have considered predictors of delayed linkage to care. The following predictors have been shown to be associated with delayed linkage to care:
- mental illness9,10,11,12
- substance use9,10,12,13 and specifically injection drug use4,7,14,15,16
- being Hispanic10,16 or African, Caribbean or black4,10,14,15,16 as compared with white
- housing insecurity or instability10,12,17,18
- younger age4,7,16,17,18
- unemployment13 or having low socioeconomic status4,9,15
- lack of emotional support or stigma9,12,19
- acquiring HIV through heterosexual contact7
- being a trans woman20
- lack of transportation9
- language barriers9
A study evaluating linkage across different settings found that those diagnosed in inpatient settings, counselling or testing centres, and correctional facilities had a 33%, 46% and 75% lower probability of linkage to care, respectively, than those diagnosed in medical clinics (that is, locations with outpatient medical care).15 Interventions to improve linkage within these testing environments are needed. Approaches such as case management and patient navigation could help to improve linkage in these situations, as well as the co-location of outpatient medical care and mental health/substance use programs.15
What elements have been identified as optimal for successful linkage to care?
Key recommendations for successful linkage to care have been included in guidelines by the International Advisory Panel on HIV Care Continuum Optimization expert panel,1 the International Association of Physicians in AIDS Care panel21 and the World Health Organization,22 as well as two review articles related to linkage to care.9,23 Recommendations related to successful linkage to care include:
- immediate referral following a positive diagnosis,1,9 including the use of active referrals (for example, a tester who makes an appointment for clients and accompanies them to appointment)9;
- use of strength-based case management9,21,23;
- use of peer support,22 health navigators1,22 or case managers1,22 and linkage support from people with high cultural and linguistic concordance9;
- intensive outreach to those who do not engage in care within one month of diagnosis and transportation services to help clients attend clinic visits1;
- support for HIV disclosure and streamlined services22 and
- monitoring of successful entry into HIV care.21
Linkage to care programs
This review identified several linkage to care programs, including two Centers for Disease Control and Prevention (CDC) evidence-based interventions and one evidence-informed intervention.* For more information on evidence classifications used in this review, see the strength of evidence section at the end of this document.
Use of linkage coordinators or counsellors
Two randomized controlled trials, eight observational, one mixed-methods and two qualitative studies indicate that the use of coordinators or counsellors to assist clients one-to-one with linkage to care can be effective. Measures of linkage to care ranged from one month to one year, with most studies defining successful linkage as being linked to an HIV clinician with 90 days of diagnosis. Linkage rates ranged from 63% to 94%.
The Antiretroviral Treatment Access Study (ARTAS) is an intervention that uses strengths-based case management, provided by a professional case manager, to link people diagnosed with HIV to an HIV clinician. The intervention provides time-limited assistance and includes five case management sessions over 90 days or until a client is linked to care. The approach includes the case manager building an effective working relationship with clients, identifying client strengths, meeting clients at a location where they feel comfortable, coordinating and linking clients to community resources and advocating on clients’ behalf for medical care and other services.10,17,24,25,26
The CDC qualifies the ARTAS intervention as an evidence-based intervention based on the following two studies:
- A randomized controlled trial (ARTAS-I) took place from 2001 to 2003 in four US cities: Atlanta, Georgia; Baltimore, Maryland; Los Angeles, California; and Miami, Florida. It compared an ARTAS intervention group with a standard of care group (the latter group received passive referral including CDC information pamphlets and referral to a local HIV clinician). Participants had tested positive for HIV, had been to a care provider no more than once in the past and were not on antiretrovirals.** The study found that significantly more people in the intervention group (78%) than in the standard of care group (60%) visited an HIV clinician within six months of diagnosis.25
- An observational study (longitudinal cohort) (ARTAS-II) considered the use of the ARTAS intervention in community settings to increase linkage to care, as well as predictors of receiving one or more HIV clinician appointments within six months of diagnosis. The study took place in 2005–2006 across 10 sites in the United States and followed participants for 12 months. Of those who completed a study survey at six months, 86% reported that they had visited an HIV clinician in the last six months. Those with two or more case management visits were three times more likely to have received care from an HIV clinician than those with fewer than two visits.17
There is additional evidence to support the use of the ARTAS intervention for successful linkage to care:
- The System Linkages and Access to Care Initiative took place in New York City and implemented one of three linkage and retention programs (that is, ARTAS, peer support or standardized appointment coordination) for clients newly diagnosed with HIV or hard-to-reach clients. A mixed-methods observational study (2014–2015) indicated that 84% of those who enrolled in the ARTAS intervention were linked to care within 90 days of enrollment. The study also found that factors that facilitated the implementation of the program were buy-in and coordination of staff, building on existing infrastructure within the organizations, and allowing for the intervention to be adapted to support clients’ needs and fit different clinical settings.27
- The North Carolina HIV Bridge Counselor Program, developed in 2012, is a statewide intervention to link people newly diagnosed with HIV to care and re-engage people with HIV who have fallen out of care. People newly diagnosed with HIV are referred to State Bridge Counselors (SBCs) by public health specialists after they make an initial HIV care appointment (public health specialists make an initial appointment with an HIV clinician for clients without scheduled appointments). The SBCs, trained in the use of ARTAS, provide brief assistance (one to two contacts with each client) in addressing barriers (for example, scheduling medical appointments, transportation, childcare). SBCs then confirm that the client attended the appointment by contacting the patient or clinic, or by documentation of a viral load test. If the patient does not attend the appointment, the SBC locates the client and helps to address their barriers to care. An observational study (2013–2015) reported that there was a median of one contact by the counsellor per client and that the total median time spent on each client was 30 minutes. Care was initiated within 90 days of referral for 63% of clients and within one year for 83% of clients.28 A qualitative study of this intervention found that use of client management software improved previously used communication methods between care team members (for example, faxes, phone calls, in-person meetings), that staff turnover was common and that frequent ARTAS refreshers were needed.29
The Extended Counselling intervention uses trained counsellors who meet with clients recently diagnosed with HIV to encourage them to disclose their HIV status to their immediate family, to encourage positive living with HIV, to provide HIV prevention education and to promote the importance of early care and attendance at HIV care appointments every three months. Clients also receive monthly two-hour counselling sessions from a community support worker, where clients are encouraged to seek care and are linked to service providers.10,26,30,31
The CDC qualifies Extended Counselling as an evidence-based intervention based on the following study:
- A randomized controlled trial took place in Uganda*** between 2009 and 2010 and compared an Extended Counselling intervention group with a standard of care group (participants in the latter group received post-test counselling from untrained staff). Study results indicated that participants in the intervention group were significantly more likely to be linked to care (68%) within five months**** than participants in the standard of care arm (39%).31
Project CONNECT was developed in 2007 to decrease no-show rates of new HIV care clients. Within five days of their first call to a clinic, clients have an orientation visit scheduled at the clinic (before their visit with an HIV clinician). During this visit, laboratory testing takes place and a facilitator builds rapport with the client and conducts a semi-structured interview and psychosocial questionnaire. This initial orientation helps the facilitator to make needed referrals to medical and social services and helps to facilitate treatment access.26,32,33
The CDC qualifies Project CONNECT as an evidence-informed intervention based on the following study:
- An observational study from Birmingham, Alabama, found that significantly more participants had a visit within six months of the orientation visit after the Project CONNECT program was initiated (81%) than before it was initiated (69%).33
A linkage to care coordinator facilitated entry to care for clients newly diagnosed with HIV in New Jersey. The coordinator saw clients at medical sites and coordinated their entry to care, which included ensuring that clients attended their first medical appointment and providing continual support to engage in care. An observational retrospective review study from 2014 followed clients up to 18 months after diagnosis (until June 2016) and found that 60% and 72% of participants were linked to medical care by 30 days and 90 days, respectively.14
The Expanded Testing and Linkage to Care (X-TLC) program in Chicago, Illinois, used linkage-to-care coordinators (social workers) who reviewed a list of clients who tested positive for HIV in clinics, emergency departments and inpatient hospitals and followed up with these clients to discuss linkage. Coordinators were available for counselling and could also schedule an appointment with an HIV clinician. The coordinators provided support to overcome barriers to linkage and made referral recommendations on the basis of the client’s needs. An observational study from 2011 to 2013 found that 89% of patients who were eligible for care were linked within a median of 16 days (range of 0 to 855 days).34
The Linkage to Care Specialist Project out of Los Angeles, California, included a clinical social worker who was integrated into an HIV testing protocol and used motivational interviewing and a strengths-based approach to link clients to care. After a positive HIV test, a client met with the linkage to care specialist to develop a support and linkage plan. The specialist maintained contact with the client and assisted them in developing the skills for successful linkage to care. An observational study from 2014 to 2015 showed that out of the people who opted to participate in the study, the majority of whom were gay men aged 18 to 39 years, 94% were linked to care (average 25.5 days; range 1 to 72 days). The specialist spent an average of 2.1 hours working with each client over an average of 4.9 interactions.35
The Immediate Staging Pilot Project (ISPP) at the Bute Street Clinic and Health Initiative for Men clinic on Davie Street in Vancouver, British Columbia, was a 12-month pilot in 2012 with the goal of increasing the number of referrals to HIV care and decreasing the time to linkage to care. The initiative included follow-up with clients to determine linkage status, enhanced nursing support and the offer of CD4 and viral load testing at the time of diagnosis. When clients returned to the clinic for test results, nurses had the opportunity to provide education and followed up with clients to address ongoing needs and to ensure linkage to care. An observational study compared outcomes for participants who received the ISPP intervention with outcomes for those who had received the standard of care (that is, offer of confirmatory serology test, post-test counselling and suggestion to see an HIV clinician via referral) before the ISPP was implemented. Study results indicated that significantly more people in the ISPP group were linked to care (88%) than in the standard of care group (62%) within three months.36
In Wisconsin, linkage to care specialists provided short-term, intensive case management and navigation services for people living with HIV to address the barriers related to linkage to or engagement in HIV medical care (for example, unstable housing, stigma, mistrust of healthcare professionals, lack of social support). Linkage to care specialists provided time-limited support to clients to help them gain the knowledge and skills they needed to participate in care. Each person received a personalized service plan. A qualitative study (2013–2014) found that clients reported that linkage to care specialists were a centralized point of care to help them navigate a complex system, while providing social and emotional support to clients. Many clients wanted to stay in the program after its completion.12 No linkage to care rates were reported in the study.
An observational study (2012–2015) on five linkage to care demonstration projects in the United States looked at the use of surveillance data to establish linkage in people newly diagnosed with HIV. Staff analyzed surveillance reports and identified people who were newly diagnosed with HIV but who did not have data on CD4 count or viral load (used as a measure of whether they had linked to care). Prevention program staff members (for example, disease intervention specialists, navigators, facilitators or bridge workers) in a health department or community-based organizations followed up to contact the medical provider of record or the client and helped the person link to care. Staff located out-of-care clients, interviewed them and linked them to medical care and other services. The study found that 89% of people with a new HIV diagnosis were linked to care within 90 days of diagnosis. Benefits of the demonstration projects were improved collaboration across surveillance staff members, HIV prevention program staff and medical providers, as well as improved surveillance data.37
Use of financial incentives
Results of one randomized trial indicates that financial incentives do not significantly increase linkage to care; however, a qualitative study of the same intervention found favourable attitudes about financial incentives among both clients and service providers.
The TLC-Plus study (2011–2013) evaluated a linkage to care program in the Bronx, New York, and Washington, D.C. The program provided financial incentives to patients newly diagnosed with HIV or those out of care for at least a year. The incentive was for $25 upon blood draw and $100 upon meeting with a clinician to discuss results and develop a care plan. A randomized controlled trial compared a group that received financial incentives with a control group and found that the use of the financial inventive had no significant impact on linkage to care (89% linked in the financial incentive group and 83% linked in the standard of care group).38
A qualitative sub-study of the TLC-Plus program explored client, staff and investigator perceptions of the implementation of the program. Results of the study indicated that the use of financial incentives was viewed positively by all groups, although there were some challenges with program implementation. Challenges that site investigators and staff mentioned included timing of discussions regarding linkage following a diagnosis (for example, sensitivity around introducing the intervention after diagnosis), logistical challenges (for example, clients losing coupons), negative attitude about providing incentives for health behaviour change, and questions around the value that financial incentives could add to existing linkage to care programs.39
Screening in emergency departments
A 2014 systematic review considered approaches to linkage to care for people diagnosed with HIV in emergency departments across the United States and analyzed data from 37 programs based in emergency departments for their linkage to care methods and rates. Intensive linkage to care strategies (identified in nine articles) included the use of a healthcare worker who physically escorted clients to a specialist clinic or an in-person interaction from an HIV specialist (for example, infectious disease doctor) in the emergency department. All other approaches were defined as “non-intensive.” The review found that 80% of clients were linked in intensive programs and 73% were linked in non-intensive programs.40
After the 2014 systematic review, a routine, integrated, opt-out HIV screening program was implemented in Alabama, which used opt-out HIV screening in an emergency department. Emergency department physicians were trained to provide post-test counselling and were provided with HIV-related information (for example, client resources related to next steps in linkage to care). After a preliminary HIV-positive result, clients received counselling and were linked to HIV care resources by emergency department physicians. A linkage coordinator also contacted newly diagnosed clients within one to two business days to schedule a linkage visit within a week of diagnosis. During the linkage visit the coordinator confirmed and explained HIV test results, reviewed prevention measures with clients, discussed initial emotional and psychological concerns, as well as health care options, and a first clinic appointment was scheduled. An observational study (2011–2014) found that 76% of patients with confirmed HIV-positive tests were successfully linked to care.41
What does this mean for organizations considering a linkage to care program?
Organizations looking to develop linkage to care programs for people following a positive HIV diagnosis should consider linking people to care immediately after diagnosis, although programs may find different ways to operationalize this recommendation. Approaches that can be integrated into linkage to care programming include the use of active referrals and strength-based case management, as well as the use of coordinators or counsellors; all of these approaches have evidence to support their use. The studies included in this review mostly involved professional counsellors/coordinators. Reviews and guidelines also recommend the use of peer support.
Evidence to support the use of the ARTAS intervention, a strengths-based case management approach that provides time-limited assistance to link clients to care over 90 days, is strong. Overall, research shows that more one-to-one or intensive interventions generally lead to better linkage to care than passive referrals to an HIV clinician. Attention should be paid to the local context in which programs are delivered and the needs of individual clients when developing these programs.
The purpose of this literature review is to summarize research information on linkage to care after an initial HIV diagnosis. The key search terms used when searching were HIV, link, linkage and human immunodeficiency virus infection (Embase search term). Searches were limited to research literature published between January 2015 and July 2018 and were focused on North America. Articles were identified using PubMed and Embase as well as through the review of reference lists of relevant articles. Articles related to case management, patient navigation and programs where linkage to care was part of a longer term program were excluded. For the purposes of this review, studies that considered re-engagement in care (i.e., linkage to care after having fallen out of care) exclusively were considered out of scope. Research literature from before 2015 on linkage to care was largely captured in the systematic review articles included here. Additional literature published before 2015 was included if it was a review article or guideline, or if the article related to interventions that supported CDC evidence-based or evidence-informed interventions.
Strength of evidence
The available scientific literature was reviewed to determine the linkage to care outcomes associated with various programmatic approaches, as well as barriers and facilitators associated with linkage to care. Although the evidence rating is flexible (to a certain degree), ratings were based on the following criteria:
- Strong evidence: At least one systematic review or a large body of randomized controlled trials and quasi-experimental studies (with the support of observational research) supports the ability of the intervention to affect the outcome.
- Moderate evidence: A limited number of randomized controlled trials and/or quasi-experimental studies (with the support of observational research) support the ability of the intervention to affect the outcome.
- Limited evidence: Observational research supports the ability of the intervention to affect the outcome.
- No evidence: No published research exists to support the ability of the intervention to affect the outcome.
The strength of the evidence is based on the quantity and quality of the evidence (type of study design) and not the size of the outcome.
The HIV/AIDS Prevention Research Synthesis (PRS) Project through the Centers for Disease Control and Prevention (CDC) identifies evidence-based interventions and best practices for HIV prevention. There are four evidence-based or evidence-informed interventions related to linkage to care discussed in the Compendium of Evidence-Based Interventions and Best Practices for HIV Prevention. The CDC uses the following criteria to evaluate interventions:
- Evidence-based interventions have been tested with a comparison group, have been rigorously evaluated, have shown significant effects related to improving linkage to care and have the strongest evidence of efficacy.
- Evidence-informed interventions do not have a comparison group but have shown significant positive effects and no significant negative effects from pre to post-intervention in linkage to care and are considered promising strategies.
*For detailed information on the CDC evidence classifications for linkage to, retention in, and re-engagement in HIV care interventions see https://www.cdc.gov/hiv/research/interventionresearch/compendium/index.html
**The study initially focused on clients diagnosed in the last six months but expanded to include those who had received positive HIV test result over six months ago.
***The Extended Counselling intervention is recommended for use through the CDC, although findings may not be applicable to other settings because of differences in health care systems (e.g., United States, Canada).
****Originally three months with two additional months considered to account for potential circumstances that would prevent someone from being able to attend an appointment.
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About the author(s)
Amanda Giacomazzo is CATIE’s knowledge specialist, treatment and prevention programming. She holds a Masters degree in health science with specialised training in health services and policy research and has previously worked in knowledge translation and public health at the provincial level and in the not for profit sector.