Antiretroviral therapy (ART) has the potential to curb the effects of the HIV epidemic. ART reduces AIDS-related morbidity and mortality, with gains in clinical outcomes the greatest among individuals who start treatment early (Johnson et al., 2013; The INSIGHT START Study Group, 2015). ART is also effective in reducing onward HIV transmission (Cohen et al., 2011) and consequently for reducing HIV incidence. Accordingly, the World Health Organisation (WHO) recommends ART for all HIV-positive individuals (WHO, 2016), and South Africa adopted a ‘test-and-treat’ policy in September 2016 (Motsoaledi, 2016).

HIV diagnosis and ART initiation early in disease progression are key to the success of the treat-all approach. However, a substantial proportion of people living with HIV remain undiagnosed (UNAIDS, 2014), and many seek care only once their immune system is severely compromised (Carmona et al., 2018; Lahuerta et al., 2014). Home-based HIV Testing Services (HBHTS) are effective in reaching previously undiagnosed individuals (Lewis et al., 2019; Sharma, Ying, Tarr, & Barnabas, 2015), and an important component of the test-and-treat strategy (WHO, 2016). Poor rates of linkage to care subsequent to HBHTS could, however, undermine the potential benefits of early detection of HIV-positive cases.

In the absence of interventions to facilitate linkage to care, the proportion of individuals linking to care after HBHTS is low in many countries (Sharma et al., 2015). In Kenya, 15% of participants had seen a clinician within three years of diagnosis (Genberg et al., 2015). In Swaziland, 34% of individuals testing HIV-positive during HBHTS linked to HIV care within six months (Parker et al., 2015). In South Africa, the proportion linking to care following HBHTS was 62% within three months in one study (Naik et al., 2015), and 47.5% within six months in another (Iwuji et al., 2016). Important gaps remain in our understanding of poor linkages to care. A recent systematic review found that few studies have assessed the factors affecting linkage to care following HBHTS among newly diagnosed individuals (Ruzagira et al., 2017). As active case finding through HBHTS and subsequent referral to clinics for ART remains important for achieving universal treatment access, it is necessary to better understand how to effectively link newly diagnosed individuals living with HIV to care. Moreover, as most studies have focused on socioeconomic and demographic determinants of linkage to care, there is a gap in our understanding of the psychosocial factors acting as barriers to HIV care.

This study used prospective data – from men and women (15–49 years old) in a hyper-endemic setting – to assess the association between linkage to care following a first-time HIV-positive diagnosis through HBHTS and a range of demographic, socioeconomic and psychosocial factors.

Figure 1 displays the study profile. Thirty-seven percent of HIPSS participants agreed to the HBHTS, with already knowing their HIV-positive status being the most common reason for refusal. HIV-prevalence in the rapid test sample was 8% (n=313). Follow-up telephone surveys were completed with 63% (n=196) of the HIV-positive cohort. The main reasons for incomplete follow-up were not being reachable (77%); refusal (14%); and participants not believing their HIV-positive status (9%). In total, 183 participants were included in the analysis after excluding 13 participants: eight who self-reported an HIV-positive status at baseline, one reporting being on ART, and four individuals missing data on their most recent HIV test or on linkage to care.

Our prospective study sample consisted of Black African individuals, who reported high levels of food insecurity and low levels of education (Table 1). Few were at an advanced stage of disease progression, with only 15% having a CD4 < 200 cells/μL. Differences in characteristics were generally small and statistically insignificant between participants who completed the follow-up linkage to care survey and those that did not.

Linking individuals to HIV care and treatment following HBHTS is necessary to achieve the full therapeutic and prevention benefits of ART. Our study results demonstrate poor rates of early linkage to care following HBHTS in a high HIV prevalence region in South Africa. This finding is consistent with those from elsewhere within the KwaZulu-Natal province (Iwuji et al., 2016; Naik et al., 2015), and in sub-Saharan Africa (Genberg et al., 2015; Parker et al., 2015; Sharma et al., 2015). Study results underline the need for interventions to facilitate ART initiation following community-based HIV diagnosis, especially as HIV-testing with facilitated linkage to care has been demonstrated to improve uptake of HIV services (Barnabas et al., 2014).

Results indicate that HIV-status denial is a major barrier to linkage to care. Participants (approximately one third) who had doubted their HIV diagnosis were less likely to link to care; and almost a quarter of women reported not visiting a clinic because they did not believe their HIV diagnosis. Furthermore, 9% of eligible study participants did not complete the follow-up survey because they did not believe that they had HIV. While denial has been cited by participants as a reason for delayed linkage to care (Paz-Bailey et al., 2013), and several qualitative studies have identified denial as a barrier to HIV services (Bogart et al., 2013; Horter et al., 2017; Nakigozi et al., 2013; Stinson & Myer, 2012; Wringe et al., 2009), few cohort studies have assessed denial as a predictor of linkage to care. Our study therefore adds to the quantitative evidence that denial of status is common and can both impede linkage to care after community-based HIV testing (Medley et al., 2013; Naik et al., 2015), and undermine ART readiness (Maughan-Brown, Smith, et al., 2018b). Denial of an HIV diagnosis may be common because self-perceived risk of HIV-infection is often inaccurate (Maughan-Brown & Venkataramani, 2018). In the treat-all era it is likely that HIV-status denial will remain an impediment to ART initiation as efforts are made to diagnose individuals earlier in disease progression, while they are asymptomatic.

Success in diagnosing people living with HIV before they are symptomatic, a demonstrated advantage of HBHTS (Suthar et al., 2013), is also coupled with the challenge of linking individuals to care because many people do not want to initiate onto ART while feeling healthy. In our study, 48% of all participants (61% of men) who had not visited a clinic reported that they intended starting treatment only once they are sick. Health status has also been positively associated with delayed ART initiation (Hatcher et al., 2012; Katz et al., 2011; Plazy et al., 2014), and there is the perception that ART is reserved for sick individuals (Katz et al., 2015). Asymptomatic individuals may delay ART initiation because they perceive ART as more of an immediate risk/cost than benefit. The high costs (real and perceived) associated with linkage to care are reflected by our study findings that insufficient time or money, and fear of discrimination were common reasons reported for not having visited a clinic, which is consistent with findings from elsewhere in South Africa (Bogart et al., 2013; Maughan-Brown, Kuo, et al., 2018a; Smith et al., 2013). Fear of ART side-effects was also common, adding to the growing evidence that anxiety relating to drug toxicity is a leading psychosocial barrier to treatment (Fox et al., 2010; Naik et al., 2015). While modern ART has a much improved side-effect profile, previous eras with inferior drugs may have resulted in a general perception that ART results in illness (Katz & Maughan-Brown, 2017).

Our findings also add to the evidence that people who disclose their HIV status are more likely to link to care (Govindasamy et al., 2013; 2011; Hatcher et al., 2012; Medley et al., 2013). While it is unknown whether disclosure led to, or resulted from, a supporting environment, our results further highlight the importance of social support for linkage to HIV services (Kelly, Hartman, Graham, Kallen, & Giordano, 2014). Our study did not find evidence of an association between linkage to care and several factors previously reported to affect linkage, such as gender, age, stigma, depressive symptoms, and distance from clinic.

Study results should be considered along with the methodological limitations. Self-reporting bias might have influenced the accuracy of the study measures. In particular, self-reported linkage to care has been documented to be higher than verified linkage to care in some studies (Hoffmann et al., 2017; MacKellar et al., 2016), although this is not always the case (Govindasamy et al., 2011). There is uncertainty around the extent of discrepancies between self-reports and clinic records as matching study participants to clinic records is difficult (Hoffmann et al., 2017), and there is often inadequate record keeping in clinics (Dorward et al., 2017). We could not create a verified linkage to care measure as participants had not consented to a clinic record review. Sample selection bias may also have been introduced via study attrition. Study attrition might have resulted in overestimated rates of linkage to care since participants who were not reached for the telephonic interview might have been less likely to link to care, particularly as denial of an HIV-positive status was a reason for attrition and as attrition was associated with not being married (a potential proxy for less social support). In addition, other important determinants may not have been detected due to the sample size. Finally, it is unclear how our findings would apply in other settings, such as regions with lower HIV-prevalence.

Overall, our findings highlight a significant challenge in linking individuals to HIV care post HBHTS and point to the need to pair HBHTS with targeted interventions to facilitate this linkage. Multifaceted interventions involving follow-up support appear to be effective (Barnabas et al., 2014; Van Rooyen et al., 2013). Same-day home-based ART initiation following HBHTS also show promise (Labhardt et al., 2018). In particular, our results indicate that post-test counselling and supporting interventions need to be specifically designed to counter HIV status-denial; and that targeted interventions are needed to encourage early ART initiation among individuals whose inclination is to initiate on ART only once they are ill.