Experiencing kindness from health staff, having someone to attend clinics with, and not being rushed in appointments are among a handful of factors strongly associated with adolescents in South Africa staying on HIV treatment. The findings are drawn from the experiences of just over 1,000 HIV-positive adolescents (aged 10 to 19) from a sub-district in the Eastern Cape where HIV prevalence among young people is high and healthcare faces resource challenges.
Researchers from the department of internal medicine, School of Clinical Medicine, faculty of health sciences, health economics and epidemiology research office, University of the Witwatersrand, Johannesburg, identified all 10 to 19 year‐olds who had started antiretroviral treatment (ART) at a government-run facility in the area between March 2014 and September 2015. Combining health records with interviews and self-report data, they assessed the impact of 11 factors on the retention of adolescents in HIV care.
Of the 1,176 adolescents included in the study, 56% were considered fully retained in care – meaning that they had not missed any clinic visits in the past year and had fully adhered to treatment in the past week – 84% reported not missing an appointment in the past year and 64% reported adhering to ART in the last week. Researchers controlled for age, gender, location, housing, orphan status, route of HIV infection, overall health, length of time on ART and type of healthcare facility.
Overall, five factors were found to be strongly associated with retention. Alongside staff kindness, being accompanied to clinics and having time in appointments, having enough money to get to clinics safely and clinics having HIV medication in stock were also significantly associated with better retention.
When none of these factors were present, just 3.3% of adolescents reported retention, rising to between 4.7% and 9.2% if one of the five factors was present. With any two of the five factors present, retention ranged from 10.6% to 21.3%, with any three from 22.9% to 40.2%, and with any four from 44% to 61.5%. With all five, retention rose to 69.5%.
Surprisingly, the time it took to travel to a clinic, waiting times, access to sufficient information, trust in the confidentiality of health data, having a treatment ‘buddy’ or being a member of a monthly support group were not significantly associated with increased retention. However, as very few participants (14%) attended any support group, and only 5% attended an adolescent‐specific support group, the lack of an association with this final factor could indicate that those questioned were struggling to relate to the adult‐focused support services on offer.
These findings provide important insight into what matters to HIV-positive adolescents in South Africa when it comes to treatment. It suggests relatively low‐cost interventions within households and clinics could have a direct impact on retention rates.
Crucially, it indicates providing both financial and emotional support for adolescents living with HIV could be equally important for improving retention rates as strengthening health infrastructure and staff capacity.
Introduction: South Africa is moving into a new era of HIV treatment with “treat all” policies where people may be on treatment for most of their lives. We need to understand treatment outcomes and facilitators of long‐term antiretroviral treatment (ART) adherence and retention‐in‐care in the South African context. In one of the first studies to investigate long‐term treatment outcomes in South Africa, we aimed to describe ten‐year patient outcomes at a large public‐sector HIV clinic in Johannesburg and explore patient experiences of the treatment programme over this time in order to ascertain factors that may aid or hinder long‐term adherence and retention.
Methods: We conducted a cohort analysis (n = 6644) and in‐depth interviews (n = 24) among HIV‐positive adults initiating first‐line ART between April 2004 and March 2007. Using clinical records, we ascertained twelve‐month and ten‐year all‐cause mortality and loss to follow‐up (LTF). Cox proportional hazards regression was used to identify baseline predictors of attrition (mortality and LTF (>3 months late for the last scheduled visit)) at twelve months and ten years. Twenty‐four patients were purposively selected and interviewed to explore treatment programme experiences over ten years on ART.
Results: Excluding transfers, 79.5% (95% confidence intervals (CI): 78.5 to 80.5) of the cohort were alive, in care at twelve months dropping to 35.1% (95% CI: 33.7 to 36.4) at ten years. Over 44% of deaths occurred within 12 months. Ten‐year all‐cause mortality increased, while LTF decreased slightly, with age. Year and age at ART initiation, sex, nationality, baseline CD4 count, anaemia, body mass index and initiating regimen were predictors of ten‐year attrition. Among patients interviewed, the pre-treatment clinic environment, feelings of gratitude and good fortune, support networks, and self‐efficacy were facilitators of care; side effects, travel and worsening clinical conditions were barriers. Participants were generally optimistic about their futures and were committed to continued care.
Conclusions: This study demonstrates the complexities of long‐term chronic HIV treatment with declining all‐cause mortality and increasing LTF over ten years. Barriers to long‐term retention still present a significant challenge. As more people become eligible for ART in South Africa under “treatment for all,” new healthcare delivery challenges will arise; interventions are needed to ensure long‐term programme successes continue.
Cheryl J Hendrickson, Sophie JS Pascoe, Amy N Huber, Aneesa Moolla, Mhairi Maskew, Lawrence C Long, Matthew P Fox