High Unreported Mortality in Children and Youth (&lt;25 Years) Living With HIV Who Were Lost to Care From Antiretroviral Therapy Programs in Southern Africa: Results From a Multicountry Tracing Study

Nyakato, Patience; Christ, Benedikt; Anderegg, Nanina; Muhairwe, Josephine; Jefferys, Laura; Dijk, Janneke van; Vinikoor, Michael J.; Lettow, Monique van; Chimbetete, Cleophas; Phiri, Sam; Egger, Matthias; Ballif, Marie; Yiannoutsos, Constantin T.; Schomaker, Michael; Kassanjee, Reshma; Davies, Mary‐Ann; Cornell, Morna

doi:10.1097/qai.0000000000003090

Cited by 3 publications

(4 citation statements)

References 27 publications

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“…Our study confirms previous findings that reported LTFU is non-ignorable, as patients reported as lost were identified as deceased or self-transferred, and demonstrates the complementarity of tracing and linkage in outcome ascertainment [9,17,[24][25][26]. In addition, the reasons for reported LTFU among CAYHIV may be different from those of adults.…”

Section: Discussionsupporting

confidence: 87%

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Correcting mortality estimates among children and youth on antiretroviral therapy in southern Africa: A comparative analysis between a multi‐country tracing study and linkage to a health information exchange

Nyakato,

Schomaker,

Boulle

et al. 2024

Tropical Med Int Health

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ObjectivesThe objective of this study is to assess the outcomes of children, adolescents and young adults with HIV reported as lost to follow‐up, correct mortality estimates for children, adolescents and young adults with HIV for unascertained outcomes in those loss to follow‐up (LTFU) based on tracing and linkage data separately using data from the International epidemiology Databases to Evaluate AIDS in Southern Africa.MethodsWe included data from two different populations of children, adolescents and young adults with HIV; (1) clinical data from children, adolescents and young adults with HIV aged ≤24 years from Lesotho, Malawi, Mozambique, Zambia and Zimbabwe; (2) clinical data from children, adolescents and young adults with HIV aged ≤14 years from the Western Cape (WC) in South Africa. Outcomes of patients lost to follow‐up were available from (1) a tracing study and (2) linkage to a health information exchange. For both populations, we compared six methods for correcting mortality estimates for all children, adolescents and young adults with HIV.ResultsWe found substantial variations of mortality estimates among children, adolescents and young adults with HIV reported as lost to follow‐up versus those retained in care. Ascertained mortality was higher among lost and traceable children, adolescents and young adults with HIV and lower among lost and linkable than those retained in care (mortality: 13.4% [traced] vs. 12.6% [retained‐other Southern Africa countries]; 3.4% [linked] vs. 9.4% [retained‐WC]). A high proportion of lost to follow‐up children, adolescents and young adults with HIV had self‐transferred (21.0% and 47.0%) in the traced and linked samples, respectively. The uncorrected method of non‐informative censoring yielded the lowest mortality estimates among all methods for both tracing (6.0%) and linkage (4.0%) approaches at 2 years from ART start. Among corrected methods using ascertained data, multiple imputation, incorporating ascertained data (MI(asc.)) and inverse probability weighting with logistic weights were most robust for the tracing approach. In contrast, for the linkage approach, MI(asc.) was the most robust.ConclusionsOur findings emphasise that lost to follow‐up is non‐ignorable and both tracing and linkage improved outcome ascertainment: tracing identified substantial mortality in those reported as lost to follow‐up, whereas linkage did not identify out‐of‐facility deaths, but showed that a large proportion of those reported as lost to follow‐up were self‐transfers.

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Section: Discussionsupporting

confidence: 87%

“…Although mortality was higher among CAYHIV reported as LTFU and traced compared with those retained [16, 17, 25–28], previous studies have reported even higher mortality estimates in those LTFU [1, 3, 29]. In rural Tanzania, 40% of adults living with HIV who were reported LTFU and traced, had died [27].…”

Section: Discussionmentioning

confidence: 99%

Correcting mortality estimates among children and youth on antiretroviral therapy in southern Africa: A comparative analysis between a multi‐country tracing study and linkage to a health information exchange

Nyakato,

Schomaker,

Boulle

et al. 2024

Tropical Med Int Health

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“…This number likely includes a substantial number who remained in care but transferred out of the respective cohort, especially within VICONEL, which does not have a system to capture transfers to non-VICONEL clinics. Nevertheless, children and adolescents with HIV with missing viral loads might have higher rates of viraemia and subsequent poor outcomes, as described in a multinational tracing study [ 32 ] for the predolutegravir era. Second, there may be unmeasured confounders.…”

Section: Discussionmentioning

confidence: 99%

HIV viral suppression in children and adolescents 2 years after transition to dolutegravir: a multicentre cohort study

Devendra,

Kohler,

Letsika

et al. 2024

Aids

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Background: Treatment failure is common among children and adolescents with HIV. Antiretroviral therapy (ART) containing dolutegravir has recently been rolled out across Africa, though long-term real-world data in paediatric populations are lacking. Here, we report treatment outcomes among children and adolescents in Lesotho who transitioned from non-nucleoside reverse transcriptase inhibitor- (NNRTI-) to dolutegravir-based ART through two years’ follow-up. Methods: Data were derived from two open cohort studies in Lesotho. Children and adolescents aged < 18 years who transitioned from NNRTI- to dolutegravir-based ART at least 18 months before data closure were included. We report viral load results <12 months before, 12 (window: 6–17) months after, and 24 (window: 18–29) months after transition to dolutegravir. Associations of pre-transition demographic and clinical factors with 24-month viraemia were assessed through multivariable logistic regression. Results: Among 2126 included individuals, 1100 (51.7%) were female, median age at transition to dolutegravir was 14.0 years (interquartile range [IQR] 11.5–15.8), and median time taking ART at transition was 7.6 years (IQR 4.4–10.6). Among those with a viral load result at the respective time points, viral suppression to <50 copies/mL was achieved by 1635/1973 (82.9%) <12 months before, 1846/2012 (91.8%) 12 months after, and 1725/1904 (90.6%) 24 months after transition to dolutegravir. Pre-transition viraemia was associated with viraemia at 24 months, though >80% of individuals with pre-transition viraemia achieved resuppression to <50 copies/mL at 24 months. Conclusions: The proportion of children and adolescents with viral suppression increased after transition to dolutegravir, though further progress is needed to reach global targets.

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“…We observed far lower mortality compared to children who were traced in Malawi (2.6% vs. 11%) and 6 southern African countries (2.6% vs. 9%). 22,23 Mortality may be lower in the WC than in Malawi or other southern African countries due to better access to health care, nutrition and less poverty. 2,[24][25][26] Conversely, our study may have underestimated mortality because of limited death ascertainment outside the WC.…”

Section: Discussionmentioning

confidence: 99%

Self-transfers, Hospital Admissions and Mortality Among Children and Adolescents Lost to Follow-up From Antiretroviral Therapy Programs in the Western Cape, South Africa Between 2004 and 2019: Linkage to Provincial Records

Nyakato,

Boulle,

Wood

et al. 2024

Pediatric Infectious Disease Journal

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Background: Pediatric programs face a high rate of loss to follow-up (LTFU) among children and adolescents living with HIV (CAHIV). We assessed true outcomes and predictors of these among CAHIV who were LTFU using linkage to the Western Cape Provincial Health Data Centre at Western Cape sites of the International epidemiology Databases to Evaluate AIDS-Southern Africa collaboration. Methods: We examined factors associated with self-transfer, hospital admission and mortality using competing risks regression in a retrospective cohort of CAHIV initiating antiretroviral therapy <15 years old between 2004 and 2019 and deemed LTFU (no recorded visit at the original facility for ≥180 days from the last visit date before database closure and not known to have officially transferred out or deceased). Results: Of the 1720 CAHIV deemed LTFU, 802 (46.6%) had self-transferred and were receiving care elsewhere within the Western Cape, 463 (26.9%) had been hospitalized and 45 (2.6%) CAHIV had died. The overall rates of self-transfer, hospitalization, mortality and LTFU were 9.4 [95% confidence interval (CI): 8.8–10.1], 5.4 (95% CI: 5.0–6.0), 0.5 (95% CI: 0.4–0.7) and 4.8 (95% CI: 4.4–5.3) per 100 person-years respectively. Increasing duration on antiretroviral therapy before LTFU was associated with self-transfers while male sex, older age at last visit (≥10 years vs. younger) were associated with hospital admission and immune suppression at last visit was associated with 5 times higher mortality. Conclusions: Nearly half of CAHIV classified as LTFU had self-transferred to another health facility, a quarter had been hospitalized and a small proportion had died.

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High Unreported Mortality in Children and Youth (<25 Years) Living With HIV Who Were Lost to Care From Antiretroviral Therapy Programs in Southern Africa: Results From a Multicountry Tracing Study

Cited by 3 publications

References 27 publications

Correcting mortality estimates among children and youth on antiretroviral therapy in southern Africa: A comparative analysis between a multi‐country tracing study and linkage to a health information exchange

Correcting mortality estimates among children and youth on antiretroviral therapy in southern Africa: A comparative analysis between a multi‐country tracing study and linkage to a health information exchange

HIV viral suppression in children and adolescents 2 years after transition to dolutegravir: a multicentre cohort study

Self-transfers, Hospital Admissions and Mortality Among Children and Adolescents Lost to Follow-up From Antiretroviral Therapy Programs in the Western Cape, South Africa Between 2004 and 2019: Linkage to Provincial Records

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