Understanding Reasons for and Outcomes of Patients Lost to Follow-Up in Antiretroviral Therapy Programs in Africa Through a Sampling-Based Approach

Abstract

Objectives Losses to follow-up after initiation of antiretroviral therapy (ART) are common in Africa and are a considerable obstacle to understanding the effectiveness of nascent treatment programs. We sought to characterize, through a sampling-based approach, reasons for and outcomes of patients who become lost to follow-up. Design Cohort study. Methods We searched for and interviewed a representative sample of lost patients or close informants in the community to determine reasons for and outcomes among lost patients. Results Three thousand six hundred twenty-eight HIV-infected adults initiated ART between January 1, 2004 and September 30, 2007 in Mbarara, Uganda. Eight hundred twenty-nine became lost to follow-up (cumulative incidence at 1, 2, and 3 years of 16%, 30%, and 39%). We sought a representative sample of 128 lost patients in the community and ascertained vital status in 111 (87%). Top reasons for loss included lack of transportation or money and work/child care responsibilities. Among the 111 lost patients who had their vital status ascertained through tracking, 32 deaths occurred (cumulative 1-year incidence 36%); mortality was highest shortly after the last clinic visit. Lower pre-ART CD4+ T-cell count, older age, low blood pressure, and a central nervous system syndrome at the last clinic visit predicted deaths. Of patients directly interviewed, 83% were in care at another clinic and 71% were still using ART. Conclusions Sociostructural factors are the primary reasons for loss to follow-up. Outcomes among the lost are heterogeneous: both deaths and transfers to other clinics were common. Tracking a sample of lost patients is an efficient means for programs to understand site-specific reasons for and outcomes among patients lost to follow-up.

Loss to Follow-Up among HIV Positive Pregnant and Lactating Mothers on Lifelong Antiretroviral Therapy for PMTCT in Rural Uganda

“…This forces mothers to resort to walking long distances. This finding is in agreement with other studies, where distance to the clinic and transport cost were found to be major barriers to retention in care in a wide variety of settings in Africa including Uganda [12].…”

The social and clinical characteristics of patients on antiretroviral therapy who are ‘lost to follow-up’ in KwaZulu-Natal, South Africa: a prospective study

“…The study found that the relative risk of death was associated with lower CD4 cell counts and HIV depression scores, which was also found in other studies (Cornell, Myer, Kaplan, Bekker & Wood, 2009;Geng et al, 2009;Hartzell et al, 2008). This finding suggests that treating depression at ART initiation as previously recommended (Jia et al, 2005) may be indicated in this South African population.…”

Attendance at an outpatient follow-up clinic by HIV-positive psychiatric patients initiated on ART as inpatients

“…[6,9] To our knowledge, there is no other literature examining early attendance rates at an integrated neuropsychiatric clinic in SA following inpatient initiation of ART. Integrated care has been shown to improve outcomes, with a number of different models of mental health and HIV integrated programmes described in the literature.…”

“…[8] Reasons why patients may fail to attend clinic appointments include patient choice, forgetfulness, acute illness, hospitalisation, transfer to another treatment site and death. [9] Research has shown an association between clinic attendance and adherence to medication. [10] Integrated HIV and mental healthcare might result in improved rates of clinic attendance, by providing personalised follow-up, specifically tailored to the needs of those with a mental illness as well as HIV infection.…”