Lost or just not following up

OBJECTIVE: Locate persons living with HIV (PLWH) presumed lost to follow-up (LTFU), and assist them with partner services and linkage to HIV-related care. DESIGN: Locate and facilitate re-engagement in care for PLWH-LTFU in New York City (NYC), with longitudinal follow-up using HIV surveillance registry. SETTINGS: HIV care facilities and communities in NYC. PATIENTS: PLWH, reported in the NYC HIV surveillance registry, who had a NYC care provider and residential address at last report in the registry. Presumed-LTFU was defined as having no CD4+ or viral load during the most recent 9 months during the study period July 2008-December 2010. INTERVENTION: Case-workers conducted public health investigation to locate PLWH presumed-LTFU and offered them assistance with partner and linkage-to-care services. MAIN OUTCOME MEASURES: Results of partner and linkage-to-care services, and reasons for LTFU. RESULTS: From July 2008 to December 2010, 797 PLWH presumed-LTFU were prioritized for investigation; 14% were never located. Of the 689 located, 33% were current to care, 5% had moved or were incarcerated, 2% had died, and 59% (409) were verified to be LTFU. Once located, 77% (315/409) accepted clinic appointments, and 57% (232/409) returned to care. Among the 161 who provided reasons for LTFU, the most commonly reported was 'felt well' (41%). CONCLUSIONS: Health department case-workers helped more than half PLWH-LTFU re-engage in HIV medical care. HIV prevention strategies must include efforts to re-engage PLWH-LTFU in care, for treatment consideration under current treatment guidelines to improve their clinical status and decrease transmission risk.