Objective The aim of this study was to use a sampling-based approach to obtain estimates of retention in HIV care before initiation of antiretroviral treatment (ART), corrected for outcomes in patients who were lost according to clinic registers.
Design Retrospective cohort study of HIV-positive individuals not yet eligible for ART (CD4 >500).
Setting Three urban and three rural HIV care clinics in Uganda; information was extracted from the clinic registers for all patients who had registered for pre-ART care between January and August 2015.
Participants A random sample of patients who were lost according to the clinic registers (>3 months late to scheduled visit) was traced to ascertain their outcomes.
Outcome measures The proportion of patients lost from care was estimated using a competing risks approach, first based on the information in the clinic records alone and then using inverse probability weights to incorporate the results from tracing. Cox regression was used to determine factors associated with loss from care.
Results Of 1153 patients registered for pre-ART care (68% women, median age 29 years, median CD4 count 645 cells/µL), 307 (27%) were lost according to clinic records. Among these, 195 (63%) were selected for tracing; outcomes were ascertained in 118 (61%). Seven patients (6%) had died, 40 (34%) were in care elsewhere and 71 (60%) were out of care. Loss from care at 9 months was 30.2% (95% CI 27.3% to 33.5%). After incorporating outcomes from tracing, loss from care decreased to 18.5% (95% CI 13.8% to 23.6%).
Conclusion Estimates of loss from HIV care may be too high if based on routine clinic data alone. A sampling-based approach is a feasible way of obtaining more accurate estimates of retention, accounting for transfers to other clinics.
- loss to follow up
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JB and KB are joint senior authors on this work
Contributors PN, ANK, JB and KB conceived and designed the study. PN, ANK and AK conducted the study. PN analysed the data and developed the first draft. ANK, JB and KB advised on data analysis. All authors contributed to the interpretation of the data, revised the article critically and approved the final version.
Funding This work was supported by the European and Developing Countries Clinical Trials Partnership (EDCTP) through project MF.2013.40205.020; however, EDCTP cannot accept any responsibility for information or views expressed herein. JB and KB receive support from the MRC UK and DFID–MRC Grant Reference MR/K012126/1. This award is jointly funded by the UK Medical Research Council (MRC) and the UK Department for International Development (DFID) under the MRC/DFID Concordat agreement and is also part of the EDCTP2 programme supported by the European Union.
Competing interests PN and JB had research grant support from EDCTP for the submitted work; KB and JB receive research grants from MRC UK and DFID; no financial relationships with any organisations that might have an interest in the submitted work in the previous 3 years.
Patient consent Not required.
Ethics approval London School of Hygiene and Tropical Medicine Ethics Committee (Ref 10334), Makerere University School of Public Health Higher Degrees Research and Ethics Committee (Ref 353), Infectious Diseases Scientific Review Committee and the Uganda National Council for Science and Technology (Ref 3998).
Provenance and peer review Not commissioned; externally peer reviewed.
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