Data linkage reduces loss to follow-up in an observational HIV cohort study

Teresa Hill*, Loveleen Bansi, Caroline Sabin, Andrew Phillips, David Dunn, Jane Anderson, Philippa Easterbrook, Martin Fisher, Brian Gazzard, Richard Gilson, Margaret Johnson, Clifford Leen, Chloe Orkin, Achim Schwenk, John Walsh, Alan Winston, Abdel Babiker, Valerie Delpech

*Corresponding author for this work

    Research output: Contribution to journalArticlepeer-review

    23 Citations (Scopus)


    Objective: To ascertain the degree of loss to follow-up in a cohort and to identify its predictors. Study Design and Setting: Human immunodeficiency virus (HIV)-einfected individuals without CD4 cell counts for a year or more were defined as potentially lost to follow-up (LFU). Multivariable Poisson regression models identified the risk factors for potential LFU. Multivariable logistic regression models compared demographic and clinical characteristics of those who returned for care and those permanently LFU. Results: Of 16,595 patients under follow-up, 43.6% were potentially LFU at least once. Of these, 39.8% were considered permanently LFU and 60.2% were seen again after 1 year. Of 9,766 episodes when patients were potentially LFU, 59% resulted in the patient returning for care at the same clinic or at a different clinic. Compared with those permanently LFU, patients returning were more likely to have started highly active antiretroviral therapy, to have higher CD4 counts and viral loads, to be younger, and to have had more CD4 tests before LFU. They were less likely to have had a previous episode of potential LFU. Conclusions: A substantial proportion of patients in the UK Collaborative HIV Cohort study are potentially LFU. Data linkage identifies patients returning for care at different centers. Recognition of factors associated with LFU may help reduce this important source of bias in observational databases.

    Original languageEnglish
    Pages (from-to)1101-1109
    Number of pages9
    JournalJournal of Clinical Epidemiology
    Issue number10
    Publication statusPublished - Oct 2010

    Bibliographical note

    Funding Information:
    The authors would like to thank all the clinicians, data managers, information analysts, and research nurses in participating clinical centers ( Appendix ) who have assisted with the provision of data for this project. This work was funded by the Medical Research Council , UK (Grants G0000199 and G0600337 ). The views expressed in this manuscript are those of the researchers and not necessarily those of the Medical Research Council.


    • Cohort
    • Data linkage
    • Follow-up
    • HIV
    • Loss to follow-up
    • Risk factors


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