HIV-positive patients lost to follow-up successfully identified and re-engaged with care by programme in LA County

A programme in Los Angeles County successfully re-engaged and retained patients who dropped out of HIV care, investigators report in the online edition of the Journal of Acquired Immune Deficiency Syndromes. Called the Navigation Program, it was a collaboration between health department staff and community organisations.

Public health databases were used to identify patients who were lost to follow-up. Best practices from programmes to trace hard-to-reach patients and a modified version of the CDC Antiretroviral Treatment Access Study (ARTAS) were employed to re-engage patients with care. Over 1000 patients lost to follow-up were identified, of which 36% were receiving care elsewhere and 29% could not be located. Of the remainder, 78 people (8%) were successfully enrolled in the programme, most of whom re-engaged with care and remained in care.  

Estimates of the proportion of HIV-positive patients in the US enrolled in long-term care range between 37% and 55%. Failure to engage with care is associated with poorer health outcomes and a higher risk of onward HIV transmission. A recent study attributed almost two-thirds of new HIV infections in the US to persons not engaged in care.


loss to follow up

In a research study, participants who drop out before the end of the study. In routine clinical care, patients who do not attend medical appointments and who cannot be contacted.

retention in care

A patient’s regular and ongoing engagement with medical care at a health care facility. 

linkage to care

Refers to an individual’s entry into specialist HIV care after being diagnosed with HIV. 


How well something works (in a research study). See also ‘effectiveness’.

virological suppression

Halting of the function or replication of a virus. In HIV, optimal viral suppression is measured as the reduction of viral load (HIV RNA) to undetectable levels and is the goal of antiretroviral therapy.

Interventions to support engagement with and retention in care are therefore urgently needed. The Patient Navigator model was developed for the care of cancer patients, but is potentially a tool to support patients with HIV. Investigators therefore designed a study to evaluate its utility and efficacy when applied to HIV-infected individuals lost to HIV care in Los Angeles County.

The programme involved seven HIV clinics, academic institutions and community support organisations. Six patient “Navigators” were hired. All had a college degree, experience of HIV case management, and most were bilingual in English and Spanish.

The Navigators worked closely with clinic staff to identify patients lost to follow-up.

A modified intervention designed by the CDC (ARTAS) to engage patients newly diagnosed with HIV care formed the basis for the study programme.

Patients were identified as lost to follow-up if they had no care visit for between six and twelve months and a viral load greater than 200 copies/ml; or no care visit for more than twelve months; or newly diagnosed and were never linked with care; or had recently been released from jail or an institution and had no regular HIV care provider.

The intervention had four components. These focused on building a relationship, needs assessment, linking to resources and enhancing strengths, and addressing reasons for disengagement.

Recruitment took place between 2012 and 2014. During this period 1139 individuals who did not establish contact with care or who dropped out of care were identified.

Of these patients, over a third (36%) has established care with another provider, 29% could not be contacted, 8% returned to the clinic independently, 7% no longer lived in the study area, 6% had died, 3% were in prison or a mental health institution.

A total of 78 individuals (7%) were located and enrolled in the Navigation Program. Most (78%) were male, 42% were aged 40 to 49 years, 50% self-identified as gay, 57% had no health insurance and almost two-thirds had an annual income below $10,000.

Participants had been infected with HIV for an average of ten years, mean viral load was approximately 57,000 copies/ml and 51% had an undetectable viral load. A third of patients were taking HIV therapy at enrolment and 81% had taken antiretrovirals at some point.

Many of the patients had unmet needs at the time of enrollment. Over a third had unmet HIV-related medical needs, 35% required assistance with food and other basic necessities, 42% required pharmacy/medication services, 43% were in need of benefits support and 60% required dental care.

On average, patients participated in five intervention visits lasting approximately eleven hours. However, 46% needed only 1-3 intervention visits, suggesting that for many patients, "less resource-intensive interventions may be sufficient to re-engage many lost HIV clinic patients."

Participants received an average of five referrals. The most common were for mental health (24%), housing/transport (19%) and financial/employment (19%).

Over two-thirds (68%) of patients enrolled in the programme were linked to care within three months, 85% within six months and 94% within twelve months. The majority (82%) of these individuals were retained in care (defined as attending second appointments three to twelve months after linkage). The proportion of patients with viral suppression increased from 51% at enrollment to 63% at the second follow-up appointment (p < 0.01).

The authors stress the importance of combining surveillance data with efforts to re-engage people in care. Navigators had access to surveillance data that allowed them to trace the address and clinic records of people missing from care, which showed that just over half were either in care elsewhere, in prison, resident outside LA County or dead. This allowed a more targeted approach to those who could be located, of whom just over half agreed to take part in the intervention study.

Nevertheless the study found that 29% of people had disappeared and could not be located either through clinic records or through at least three attempts to contact them through their last known address, including home visits, and scanning of people-finder databases, homeless shelters, jails and parks.

“The use of this combined approach is an effective model for identifying and re-engaging HIV-infected persons who are not receiving adequate HIV medical care,” conclude the authors. “The combined approach presented here has widespread utility towards achievement of National HIV/AIDS Strategy goals to improve linkage, re-engagement, retention, viral load suppression and to reduce forward HIV transmission.”


Wohl AR et al. The Navigation Program: an intervention to re-engage lost patients at 7 HIV clinics in Los Angeles County, 2012-2014. J Acquir Immune Defic Syndr. Online edition, doi: 10.1097/QAI.0000000000000871 (2015).