Tracing patients on antiretroviral treatment lost-to-follow-up in an urban slum in India

Aim. This article describes a cooperative initiative between an HIV-clinic and non-government organization network providing lost-to-follow-up tracing and delayed appointment follow-up of patients on antiretroviral treatment. Background. Loss-to-follow-up among patients on antiretroviral treatment is a major challenge in resource-constrained settings. A model of cooperation between a Médecins Sans Frontières HIV-clinic and a non-governmental-organization network was piloted in a Mumbai slum. A steady decline in delayed appointments and loss-to-follow-up was observed over 4 years. Design. Mixed method study. Methods. A study conducted in January 2011 explored potential reasons for declining loss-to-follow-up-rates. A retrospective, quantitative analysis of patient data was undertaken complemented by 22 semi-structured interviews, four focus-group discussions to explore patients\u27 and providers\u27 perceptions of tracing activities. Results/findings. The clinic loss-to-follow-up-rate has steadily declined from mid-2008-2011. Thirty-eight (4·6%) of 819 patients registered during the period were lost-to-follow-up with most lost during the first year. Rates of loss-to-follow-up between 0·3-2·4% were observed over the last 2years. Phoning the day before an appointment was perceived as the most useful intervention to avoid missing appointments. The analysis revealed a widespread fear of forced disclosure by patients during home visits. Conclusions. The low loss-to-follow-up-rate cannot be attributed to the network tracing activities alone. Phoning before appointments may result in fewer delayed appointments and prevent loss-to-follow-up. Home visits should be a last resort method of patient tracing because of the risk of HIV-status disclosure and the opportunity of discrimination from family and neighbours. © 2012 Blackwell Publishing Ltd