Barriers to starting ART and how they can be overcome: individual and operational factors associated with early and late start of treatment

OBJECTIVE Despite expanding access to antiretroviral therapy (ART) in Sub-Saharan Africa, there are few data on patients' perceptions about starting ART to explore issues affecting decisions to start ART in eligible individuals during the ART roll out. METHODS We studied patterns of ART uptake for 957 participants in a trial of cryptococcal disease prevention and performed a qualitative cross-sectional study about issues affecting decisions to start ART in this cohort. In-depth interviews (IDIs) were conducted with 48 participants who started ART after variable time on the trial. RESULTS Time to starting ART from trial enrolment decreased during the ART roll out (Median 83 days to 68 days). Multiple factors causing delay to ART were reported; awaiting home visit by service provider (P = 0.025), domestic issues (P = 0.028), moving from area (P <= 0.001) and fear of side effects (P = 0.013) were statistically significant. In the IDIs, fear of side effects was the strongest factor for delay and observation of health improvement in others on ART was the strongest inducement to start. Information from patients already taking ART was the most valued source of information. CONCLUSIONS This study provided novel information about factors encouraging people to start ART early; positive beliefs about ART were the most important. Whilst side effects of ART must not be downplayed, programmes should provide information in a balanced way to prevent unnecessary fear of starting ART. Those already receiving ART were found to be good advocates and should be utilised by ART programmes to educate others.