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, P., Schomaker, M., Boulle, A., Euvrard, J., Wood, R., Eley, B., Prozesky, H., Christ, B., Anderegg, N., Ayakaka, I., Rafael, I., Kunzekwenyika, C., Moore, C. B, van Lettow, M., Chimbetete, C., Mbewe, S., Ballif, M., Egger, M., Yiannoutsos, C. T, Cornell, M., & Davies, M. Tropical Medicine & International Health, 9:10.1111/tmi.14030 RESEARCH, John Wiley & Sons, Ltd, jul, 2024.
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 [link]Paper  doi  abstract   bibtex   
Objectives: The 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. Methods: We 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 correct- ing mortality estimates for all children, adolescents and young adults with HIV. Results: We found substantial variations of mortality estimates among children, adoles- cents 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. Conclusions: Our 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.
@article{Nyakato2024a,
abstract = {Objectives: The 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. Methods: We 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 correct- ing mortality estimates for all children, adolescents and young adults with HIV. Results: We found substantial variations of mortality estimates among children, adoles- cents 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. Conclusions: Our 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.},
author = {Nyakato, Patience and Schomaker, Michael and Boulle, Andrew and Euvrard, Jonathan and Wood, Robin and Eley, Brian and Prozesky, Hans and Christ, Benedikt and Anderegg, Nanina and Ayakaka, Irene and Rafael, Idiovino and Kunzekwenyika, Cordelia and Moore, Carolyn B and van Lettow, Monique and Chimbetete, Cleophas and Mbewe, Safari and Ballif, Marie and Egger, Matthias and Yiannoutsos, Constantin T and Cornell, Morna and Davies, Mary-Ann},
doi = {10.1111/TMI.14030},
file = {:C$\backslash$:/Users/01462563/AppData/Local/Mendeley Ltd./Mendeley Desktop/Downloaded/Nyakato et al. - 2024 - Correcting mortality estimates among children and youth on antiretroviral therapy in southern Africa A comparati.pdf:pdf},
issn = {1365-3156},
journal = {Tropical Medicine {\&} International Health},
keywords = {OA,children and youth,fund{\_}ack,linkage,loss to follow,mortality,original,self,tracing,transfer,up},
mendeley-tags = {OA,fund{\_}ack,original},
month = {jul},
pages = {10.1111/tmi.14030 RESEARCH},
pmid = {38961819},
publisher = {John Wiley {\&} Sons, Ltd},
title = {{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}},
url = {https://onlinelibrary.wiley.com/doi/full/10.1111/tmi.14030 https://onlinelibrary.wiley.com/doi/abs/10.1111/tmi.14030 https://onlinelibrary.wiley.com/doi/10.1111/tmi.14030},
volume = {9},
year = {2024}
}

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