Risk factors and true outcomes of children lost to follow-up from antiretroviral therapy in Lilongwe, Malawi C. Ardura Gracia, H. Tweya, C Feldacker, S. Phiri, R. Weigel

Lost to follow-up in ART programmes Lost to follow-up (LTFU) is common in ART programmes in sub-Saharan Africa –21% in the first 6 months –26-30% in the first 2 years LTFU can lead to treatment interruptions –Development of viral resistance to ART –Hamper HIV prevention efforts Limited information regarding LTFU in children

Objectives To explore factors associated with LTFU in children accessing ART To describe children’s true ART outcomes as determined through Back-To-Care project

Methods: Study Setting Lighthouse and Martin Preuss centre (MPC) clinics: large, public HIV/AIDS clinics in Lilongwe, Malawi Lighthouse and MPC use electronic data systems (EDS) All HIV-infected patients are registered in the EDS Visits are initially scheduled monthly then extended to 2 months for ART patients At each visit, number of remaining ARV pills and new supply are recorded and next appointment is electronically calculated

Methods: Back-To-Care Active tracing of LTFU patients was established in July 2006 – called Back-To-Care (B2C) project The B2C program intends to decrease treatment interruption and prevent loss to follow-up Every month, B2C staff generate a list of patients that miss an appointment by at least 3 weeks B2C team confirms the list by checking in patients files Patients who consent are traced up to 3 times by phone or home visit

Methods: B2C Data Collection B2C tracing staff complete paper forms on tracing efforts Information on tracing outcomes and future patient intention of ART are entered in B2C MS Access database B2C data linked to the EDS using unique identifiers –To identify patients who return after tracing

Methods: Analysis ART outcomes for national programme include transfer out, LTFU, ART stop, death and alive on ART B2C outcomes include death, uninterrupted therapy, on ARV with gaps, official transfer out, self transfer out, ART stop, never started ART and not traced Patients were censored on –Last clinic visit date –Outcome date ( death) Cox proportional hazard model was used to identify independent risk factors for LTFU among baseline patient characteristics

Results: Patients details Between Apr 2006 and Dec 2010, 1182 children accessed ART at Lighthouse and MPC clinics –197 were then excluded from analysis due to incomplete or inaccurate data Of the 985 included in the analysis, –1,999 children-years of follow-up –48% were male –Median age at ART initiation 81 months (IQR: )

Results: LTFU 251 (25%) had at least one missed appointment –Median follow-up time was 9 months (IQR: months) LTFU rate was 12.6/100 children-years –11.8% at 6 months; 16.8% at 12 months Risk factors for LTFU in multivariable analysis –Wasting (AHR % CI ) –< 2 years at ART start (AHR % CI 1.02 – 2.37) No statistically significant association with –Gender, distance to clinic, advanced WHO stage

Results: B2C tracing * No significant differences between those included in B2C list or not, or between those traced or not 201 in B2C 158 (78,6%) Successfully Traced 43 (21,4%) Not traced / Not found 17 (10,8%) Died 41 (25,9%) TO 100 (63,3%) Alive not TO 38 (93%) Official 3 (7%) ‘Silent’ 2 Never started ART 39 Stop ART 31 On ART Uninterrupted 28 On ART with Gaps

ART outcomes before/after correcting for true outcomes of LTFU children actively traced by the B2C team Results: ART outcomes 80% of children expected after tracing returned Alive on ART LTFU Died Stopped ART Transfer Out

Conclusions Majority of LTFU children were alive but had missed appointments –May be due to less capable or motivated guardians Wasting and young age (<2 years) were associated with higher rate of LTFU Lower mortality rate (11%) among children traced compared to other studies Higher proportion of official transfer-outs compared to other studies but similar to adults – poor documentation After tracing, LTFU rate reduced by 62% and mortality estimates increased from 2.6% to 4.8%

Recommendations Active LTFU of children on ART should be encouraged –Reduces LFTU rates –Increases retention –Improves mortality estimates Transfer out patients should be better documented to prevent unnecessary tracing

Acknowledgments