In the era of “Treat All” and ensuring that 90% of people living with HIV (PLHIV) achieve viral suppression, it is essential to use interventions that assist with high rates of adherence to antiretroviral therapy (ART) and strong retention in services. These interventions should be focused on what individuals' need—community support.1 Community adherence and retention services take a variety of forms, from peer support groups to community ART distribution. Access to these community services is especially important for children and adolescents living with HIV (CLHIV and ALHIV) because they are at risk of poor adherence to ART for a variety of reasons: coping with life changes; dealing with normal childhood and adolescent developmental adjustments; and managing the transition from adolescence to adulthood.2–7 Typically, rates of viral suppression in CLHIV and ALHIV are lower than those of adults, ranging from 60% to 80%.8,9
According to the 2016–2017 Lesotho Population HIV Impact Assessment (LePHIA), there are an estimated 21,950 CLHIV and ALHIV (ages 0–24 years), with 13,935 on ART.10,11 Recognizing the unique challenges in this population, stakeholders in Lesotho—the Lesotho Ministry of Health; funders including PEPFAR; and implementing partners such as Elizabeth Glazer Pediatric AIDS Foundation (EGPAF), Baylor International Pediatric AIDS Initiative (BIPAI), and Lesotho Network of AIDS Service Organizations (LENASO)—collaborated to develop and implement interventions to support CLHIV and ALHIV on ART. These interventions include Ariel Clubs, Teen Clubs, Peer Support Groups, Community Adherence Groups (CAGs), Wise Ones Youth Groups, and community health worker (CHW) active tracing and support. A component common among the interventions is monthly psychosocial support using a curriculum that addresses key issues faced by CLHIV and ALHIV. Some, but not all, of these services also include a component of ART distribution, whereas others have support services for CLHIV and ALHIV caregivers. CLHIV and ALHIV can enter into these groups either by self-selection, or by provider recommendation, where provider tendency is to refer CLHIV and ALHIV struggling with adherence.
Given the paucity of research focused on the effect of community support services on CLHIV and ALHIV, the authors reviewed program-level data from Lesotho in 2 different ways to explore the potential correlation to clinical outcomes. First, the authors reviewed district-level 12-month retention and viral suppression data from all CLHIV and ALHIV ages 5–24 years receiving services at all facilities in 3 Lesotho districts that offer community support interventions (implementation districts). Second, the authors then compared the 12-month retention and viral suppression data from the subgroup of CLHIV and ALHIV who attended hospitals in implementation districts to the same data from their counterparts who receive services at similar hospitals in districts where these services are not supported (nonimplementation districts).
A description of the community interventions implemented in Lesotho is included in Table 1.
The community interventions include a combination of peer support, caregiver involvement, and activities focused on disclosure, stigma reduction, and discrimination; adherence is monitored through pill counts, especially in areas where viral load monitoring is not yet available. Since 2008, the interventions have been slowly integrated into HIV services over the years, expanding in scope and geographic distribution as need and resources permitted.
Data from 2 geographic areas were reviewed—those districts where the community interventions described are being supported (implementation districts) and those where these interventions are not being implemented (nonimplementation districts). The review focused on all patients on ART between the ages of 5 and 24, and was based on data that were collected in September 2017 as part of routine annual results reporting for the implementation year starting October 1, 2016, and ending September 30, 2017. For this study, all data for children younger than 5 years were excluded given that community interventions are available in Lesotho starting at age 4, and data for children aged 4 are aggregated with data for 1–3 year olds and therefore not available.
Twelve-month retention was defined per the PEPFAR Monitoring, Evaluation, and Reporting (MER) guidance as patients “known to be alive and on treatment 12 months after initiation of ART.”12 For the end of fiscal year 2017 reporting period, this included patients who newly initiated ART between October 1, 2015, and September 30, 2016, and who were still considered to be on antiretroviral treatment 12 months later at the relevant 12-month mark between October 1, 2016, through September 30, 2017. Patients were considered to be on ART if they came for a visit within 90 days of their latest scheduled appointment. Patients not on ART included those who died and those considered lost to follow-up 90 days after their last missed appointment. Age was defined based on patient age at ART initiation, and ages were reported in 5-year groups: ages 5–9, 10–14, 15–19, and 20–24. Patients who were documented to have transferred out of a site were excluded from the retention calculation, whereas patients who transferred in from another site and who had initiated ART during the relevant timeframe were included.
Viral suppression was defined, per the PEPFAR MER guidance, as the percentage of patients on ART with a viral load result documented in the medical record within the past 12 months who had a viral load of less than 1000 copies per milliliter.12
At the time of data collection, routine viral load testing was not universally available because of limited laboratory capacity and other limited resources. To contextualize viral load results, we looked at a proxy indicator for viral load testing coverage, the estimated percentage of CLHIV and ALHIV on ART who had a viral load test result available in their chart. The data used in this proxy are from 2 separate indicators: the denominator of the MER viral load suppression indicator (the number of patients with a documented viral load result), divided by the MER indicator for patients currently on ART (the total number of patients on treatment at a site as of September 30, 2017). An exact proportion of viral testing coverage is not available because MER results do not provide individual-level information on patients with ART eligible for a viral load result. Sites would not be expected to have 100% coverage with this proxy indicator because patients recently initiated on treatment would not be eligible for viral load testing. Where proxy viral load testing coverage is low, suppression rates should be interpreted with caution because UNAIDS Global AIDS Monitoring guidance recommends against estimating national viral load suppression in instances where “testing is either (a) partially accessible and not representative of the untested population or (b) not routinely available.”13
For the first analysis, the authors conducted a retrospective review of 12-month retention, proxy viral load coverage, and viral suppression data from all facilities in the 3 implementation districts of Maseru, Mafeteng, and Mohale's Hoek. Data from one facility located in Mohale's Hoek were excluded because of lack of available 5-year age disaggregations.
For the second analysis, the authors collected 12-month retention, proxy viral load coverage, and viral suppression data from select sites in the 3 nonimplementation districts—Thaba-Tseka, Butha Buthe, and Mokhotlong—to compare with the implementation district data set from the first analysis. Data from these districts were collected for the same timeframe as the implementation districts data to enable like comparison. The sites selected were based on a future planned expansion of PEPFAR support to the facilities where most PLHIV from these districts were receiving treatment. In an effort to reduce interdistrict site variability, the authors chose to limit the data used in this comparison with data from hospitals from both district areas because most (78%, 10,223/13,113) data from the nonimplementation districts (the data set with the smaller total numbers) were from hospitals. Therefore, only the hospital data were used from both implementation and nonimplementation district data sets. We used Fisher exact test to compare the 2 sets of hospital results for patients retained and not retained on treatment, both for the overall group of patients ages 5–24, as well as separately for patients in each 5-year age group. Given the poor viral load coverage found in both types of districts, the authors decided not to do a statistical analysis of the viral load data obtained.
For the implementation district analysis, a total of 3102 patients who initiated ART were included, with a 12-month retention rate of 75%. There were 11,377 patients on ART by the end of September 2017. Of these, 5365 (47%) had a viral load documented in the patient record, and among them, 4641 (87%) had a suppressed viral load.
For the hospital-specific retention comparison, there were a total of 490 patients initiated on ART, with 346 (71%) receiving services from implementation district and 144 (29%) from nonimplementation district hospitals. Of these 490 CLHIV and ALHIV, 353 (73%) and 90 (63%), respectively, were still retained in care at 12 months. There were a total of 2403 patients from implementation and nonimplementation districts whose data were reviewed for the viral load comparison. Implementation district hospitals reported 1702 patients on ART, with 632 (37%) having a recorded viral load result, and 539 (85%) virally suppressed, whereas nonimplementation district hospitals reported 700 patients on ART, with 220 (31%) having a documented viral load result and 181 (82%) virally suppressed.
- Analysis of data from implementation districts
- 1. Retention rates from all facilities within the implementation districts of Maseru, Mafeteng, and Mohale's Hoek, for patients aged 5–24 years (Table 2).
Across the 3 implementation districts, 12-month retention for new patients with ART aged 5–24 years was 75% (2331/3102), with the highest retention rate in 10- to 14-year-old patients who initiated ART, and the lowest in 20- to 24-year-olds. Maseru had the highest volume of patients initiating ART and the lowest overall percent retained (74%, 1535/2070), whereas Mafeteng and Mohale's Hoek had 77% (536/699) and 85% retained (260/333), respectively. In each of the 3 districts, younger patients who started ART (ages 5–9 and 10–14) had higher retention rates than those who started ART between 15–19 and 20–24 years of age.
- 2. Viral load coverage and viral load suppression rates from all facilities within the implementation districts of Maseru, Mafeteng, and Mohale's Hoek, for patients aged 5–24 years (Table 3).
Across the 3 implementation districts, proxy viral load coverage seems highest in 5- to 9-year-olds at 82% [955/1161] and lowest in 20- to 24-year-olds at 30% [1704/5772]. Proxy viral load coverage rates decrease with increasing age. Each district had comparable overall proxy viral load coverage for patients aged 5–24 years: 46% in Maseru, 47% in Mafeteng, and 54% in Mohale's Hoek. Patients aged 20–24 years had the lowest proxy viral load coverage, ranging from 27% in Maseru, to 31% in Mafeteng, to 42% in Mohale's Hoek.
Overall, viral suppression rates in patients with a documented viral load result were above 80% for each 5-year age group, with the highest suppression rate seen in the 10- to 14-year-olds at 89% (1226/1382). However, it is difficult to interpret and generalize these results given low proxy viral load coverage rates. Documented viral suppression rates vary widely by district and age band, with the 15- to 19-year-old patient group in Mohale's Hoek having the lowest viral suppression rate (69%, 114/166), markedly lower than the suppression rates for that age group reported in Maseru and Mafeteng (90%, 837/934; and 77%, 172/224). However, given the low viral load coverage rates for this age group, the authors cannot say this finding is representative of all patients aged 15–19 years in these districts.
- Comparative analysis of data from high-volume hospitals located in implementation and nonimplementation districts
- 1. Retention rates from hospitals in implementation districts (aggregate for Maseru, Mafeteng, and Mohale's Hoek) compared with hospitals in nonimplementation districts (aggregate for Thaba-Tseka, Butha Buthe, and Mokhotlong) for patients aged 5–24 years (Table 4).
Hospitals in the implementation districts retained 73% (253/346) of all new patients with ART, whereas hospitals from the nonimplementation districts had 63% retention (90/144) (P = 0.023). For the subgroups of patients aged 10–14, 15–19, and 20–24 years, age-specific comparisons showed that implementation district hospitals seem to have higher retention rates than nonimplementation hospitals, but only the 10- to 14-year-old age group had a statistically significant difference (P = 0.009). For the 5- to 9-year age band, the smallest patient population in both groups, retention seemed higher in nonimplementation district hospitals (86%, 6/7) compared to those within implementation districts (76%, 13/17).
- 2. Viral load coverage and viral load suppression rates from hospitals in implementation districts (aggregate for Maseru, Mafeteng, and Mohale's Hoek) compared with hospitals in nonimplementation districts (aggregate for Thaba-Tseka, Butha Buthe, and Mokhotlong) for patients aged 5–24 years (Table 5).
Hospitals in the implementation districts had an overall proxy viral load coverage of 37% (632/1702) among all patients, whereas hospitals from the nonimplementation districts had an overall proxy viral load coverage of 31% (220/700). Proxy coverage in the implementation district hospitals decreased with increasing age, whereas in the nonimplementation district hospitals, it was equivalently low among all age brackets.
Overall, the reported viral suppression from the implementation district hospitals (85%) was slightly higher compared with nonimplementation district hospitals (82%). There was a greater difference in reported suppression across the districts for each of the younger 5-year age groups.5–19 By contrast, viral suppression rates for patients aged 20–24 years, who comprised most patients in both sets of hospitals, were equivalent in both districts (90% vs 88%). As noted previously, it is difficult to interpret viral suppression rates when proxy viral load coverage is low.
A number of adult studies have found HIV clinical services combined with community support interventions improve health outcomes in PLHIV.14–17 There are, however, limited peer-reviewed studies that address the same question in CLHIV and ALHIV. Two studies from South Africa analyzed the effect of community-based interventions in children and adolescents, and revealed encouraging findings. Grimswood et al found that children who received the community support services had lower rates of attrition and mortality compared with those who did not (adjusted hazard ratio of 0.57 and 0.39, respectively).18 In a similar study, Fatti et al found that those children and adolescents receiving community support services were more likely to achieve viral suppression compared with those who did not (adjusted odds ratio of 1.6), the magnitude of which widened with increased duration on ART.19
This study reviewed data from Lesotho's HIV program to explore whether there is a correlation between availability of community-based support interventions and district-level health outcomes in CLHIV and ALHIV. The first analysis found that there are reasonable rates of retention in the implementation districts. In addition, although overall coverage of viral load testing is lower than desired, rates of viral suppression among those who are tested seem to be high. The second analysis, comparing data from implementation and nonimplementation district hospitals, showed significantly higher overall retention rates for CLHIV and ALHIV in implementation districts (P = 0.023). However, when the results were stratified by 5-year age groups, only retention among 10- to 14-year-olds still seemed to be significantly higher (P = 0.009). Proxy viral load coverage was low in both district groups, limiting its interpretation. Nonetheless, viral suppression among CLHIV and ALHIV who had a documented viral load at both types of district hospitals was encouraging.
Given the overall low numbers of individuals in each of the age groups in the hospital comparison, the authors can only theorize with caution why there may be statistical significance in the 10–14 age group retention rates and not in the other age groups. It has been shown that CLHIV in the 10–14 age group are more likely to have high rates of retention in general.20 Also, in Lesotho, this age cohort had more options for different support services during the timeframe of the study, including Peer Support Groups (started 2008), Teen Clubs (started 2015), and CHW active tracing (started 2008). In comparison, children aged 4–9 years had only 1 support service available, the Ariel Club. Although there were multiple support options available to older adolescents, they are, as an age group, known to have more challenges in adherence and retention writ large. In addition, CAGs and Wise Ones Youth groups only started in 2016 and 2017, respectively, and so, their footprint during the timeframe of this study likely would have been small.
There are numerous other limitations to the findings of the study. The positive correlation found between community support service availability and 12-month retention rates should not be interpreted as causation or direct impact from the interventions. To demonstrate causation, data linking individual patients enrolled in the interventions to their retention and viral load outcomes would be needed. The routine data available at the time of this review were aggregated at facility level, preventing linkage of individual patient outcomes to interventions. Although all the CLHIV and ALHIV participating in community interventions during the study timeframe were from the implementation districts, not all CLHIV and ALHIV from the implementation districts whose results were included in this study took part in community interventions. In addition, of those CLHIV and ALHIV that partook in community support services, inclusion in these services is not random, as previously described. The impact of which CLHIV and ALHIV participated in the services and to what extent they were involved is unknown. In addition, not all interventions may have been available at all sites for the full timeframe of the study. Finally, factors such as caregiver involvement, developmental stage, urban vs rural settings, and ease of access to interventions based on geographic terrain could affect results but were not data that were collected in this study.
Several factors may have contributed to the low viral load coverage that limited its interpretation. First, routine viral load testing was still being scaled up at the beginning of the study period. Second, viral load testing in Lesotho is performed on serum samples, not dried blood spots, requiring sample collection on the day of sample transport pickup, limiting access. Finally, patients may have viral load results in the laboratory information system, but not in the patient record, the source used for MER reporting.
Many aspects of this work would benefit from further research to answer whether and how community interventions supporting CLHIV and ALHIV are directly correlated with desired outcomes. Examining individual-level impact, including an evaluation of the intervention types and dose–response relationships, would be essential to understand whether the interventions are assisting CLHIV and ALHIV, and what from these intervention packages is the key to successful results. Rigorous measurement and evaluation of community-based interventions and how they link with the facility to improve patient outcomes are essential, as is the subsequent sharing of promising practices.
As we move closer to reaching epidemic control and we are finding harder to identify and treat CLHIV and ALHIV, it is no longer suitable to provide HIV clinical services alone. Lesotho's community package of interventions aims to address the needs of CLHIV and ALHIV through age-tailored services, starting with Ariel Clubs and ending with Wise Ones Youth Groups.
Viral suppression is the backbone of epidemic control and of reaching 95/95/95, and community service programs have the potential to work in synergy with local health systems to reach these important life-saving goals.
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