Answering the ‘lost to follow-up’ problem

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A study exploring why people enrolled in antiretroviral treatment programmes across three African countries are “lost to follow-up” reveals obstacles to reaching the third “90” of UNAIDS recipe for success against the global HIV pandemic, and points to answers that can lie within communities where rates of HIV are high.

The study was led by Elvin Geng of San Francisco General Hospital’s division of HIV/Aids, and carried out across 14 sites in Uganda, Tanzania, and Kenya.

Looking at a population of more than 18,000 patients, and following available information on the 18%, or 3,150 patients, who were lost to follow-up, researchers found nearly 70% were alive and confirmed the care status of 278.

Of those in care at a new site the majority reported that barriers that included long distances and transportation had left them to leave their previous care site.

But among those who had not continued care at another site, psychological and social barriers predominated — including denial of their diagnosis and of the value of medical treatment.

The findings highlight the importance of peer support groups and peer counselling, researchers note.

Background. Improving the implementation of the global response to human immunodeficiency virus requires understanding retention after starting antiretroviral therapy (ART), but loss to follow-up undermines assessment of the magnitude of and reasons for stopping care.
Methods. We evaluated adults starting ART over 2.5 years in 14 clinics in Uganda, Tanzania, and Kenya. We traced a random sample of patients lost to follow-up and incorporated updated information in weighted competing risks estimates of retention. Reasons for nonreturn were surveyed.
Results. Among 18 081 patients, 3150 (18%) were lost to follow-up and 579 (18%) were traced. Of 497 (86%) with ascertained vital status, 340 (69%) were alive and, in 278 (82%) cases, updated care status was obtained. Among all patients initiating ART, weighted estimates incorporating tracing outcomes found that 2 years after ART, 69% were in care at their original clinic, 14% transferred (4% official and 10% unofficial), 6% were alive but out of care, 6% died in care ( Conclusions. Accounting for outcomes among those lost to follow-up yields a more informative assessment of retention. Structural barriers contribute most to silent transfers, whereas psychological and social barriers tend to result in longer-term care discontinuation.

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Clinical Infectious Diseases abstract

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