Assessing linkage to and retention in care among HIV patients in Uganda and identifying opportunities for health systems strengthening: a descriptive study

BACKGROUND: While antiretroviral therapy (ART) availability for HIV patients has increased dramatically in Uganda, patient linkage to and retention in care remains a challenge. We assessed patterns of engagement in care in 20 Ugandan health facilities with low retention based on national reporting. METHODS: We assessed patient linkage to care (defined as registering for pre-ART or ART care at the facility within 1 month of HIV diagnosis) and 6-month retention in care (having a visit 3-6 months after ART initiation) and associations with patient−/facility-level factors using multivariate logistic regression. RESULTS: Among 928 newly HIV-diagnosed patients, only 53.0% linked to care within 1 month. Of these, 83.7% linked within 1 week. Among 678 newly initiated ART patients, 14.5% never returned for a follow-up visit at the facility. Retention was 71.7% according to our primary definition but much lower if stricter definitions were used. Most patients were already falling behind appointment schedules at their first ART follow-up (median: 28 days post-initiation vs. recommended 14 days). 27.3% of newly-initiated patients had follow-up appointments scheduled 45+ days apart rather than monthly per national guidelines. Linkage and retention were not strongly correlated with each other within facilities (r(s) = 0.06; p = 0.82). Females, adolescents, and patients in rural settings tended to have lower linkage and retention in multivariable-adjusted models. CONCLUSIONS: Linkage support may be most critical immediately after testing positive, as patients are less likely to link over time. More information is needed on reasons for appointment schedules by clinicians and implications on retention. TRIAL REGISTRATION: This study was registered in the Pan African Clinical Trial Registry database (#PACTR201611001756166). ELECTRONIC SUPPLEMENTARY MATERIAL: The online version of this article (10.1186/s12879-018-3042-8) contains supplementary material, which is available to authorized users.