Introduction Loss to follow-up (LTFU) is a critical factor in determining clinical outcome in HIV treatment programs. Identifying modifiable factors of LTFU is fundamental for designing effective patient retention interventions. We analysed factors contributing to children LTFU from a treatment program to identify those that can be modified.

Methods A case-control study involving 313 children was used to compare the sociodemographic and clinical characteristics of children LTFU (cases) with those remaining in care (controls) at a large paediatric HIV care setting in Botswana. We traced children through caregiver contacts and those we found, we conducted structured interviews with the patients’ caregivers.

Results Children < 5 years were twice as likely as older children to be LTFU (20·6% vs. 7·8% and 79·4% vs. 92·2% respectively, p < 0·01). Approximately half (47·6%, n = 51) of LTFU patients failed to further engage in care after just one clinic visit, as compared to less than 1% (n = 2) in the control group (p < 0·01). Patients LTFU were more likely than controls to have advanced disease, greater immunosuppression, and not to be receiving Antiretroviral Therapy (ART). Among interviewed patient caregivers, psychosocial factors (e.g. stigma, religious beliefs, child rebellion, disclosure of HIV status) were characteristic of patients LTFU, but not of controls. Socioeconomic factors (e.g. lack of transportation, school-related activities, forgetting appointments) were cited predominantly by the controls.

Conclusion Paediatric patients and their caregivers need to be targeted and engaged at their initial clinic visit, with special attention to children <5 years. Possible interventions include providing psychosocial support for issues that deter patients from engaging with the clinic. Collaboration with community-based organisations focused on reducing stigma may be useful in addressing these complex issues.

Disclosure of interest statement Funding for this study was made possible through Fogarty International Centre of the National Institutes of Health, (M. W. Kline – Principal Investigator) under grant number D43 TW01036.