Abstract

Accurate case-based surveillance data remain the key data source for estimating HIV burden and monitoring prevention efforts in Europe. We carried out a literature review and exploratory analysis of surveillance data regarding two crucial issues affecting European surveillance for HIV: missing data and reporting delay. Initial screening showed substantial variability of these data issues, both in time and across countries. In terms of missing data, the CD4+ cell count is the most problematic variable because of the high proportion of missing values. In 20 of 31 countries of the European Union/European Economic Area (EU/EEA), CD4+ counts are systematically missing for all or some years. One of the key challenges related to reporting delays is that countries undertake specific one-off actions in effort to capture previously unreported cases, and that these cases are subsequently reported with excessive delays. Slightly different underlying assumptions and effectively different models may be required for individual countries to adjust for missing data and reporting delays. However, using a similar methodology is recommended to foster harmonisation and to improve the accuracy and usability of HIV surveillance data at national and EU/EEA levels.

Highlights

  • HIV remains one of the most important public health concerns in the European Union and European Economic Area (EU/EEA)

  • The main purpose of this paper is to explore the issues of missing data and reporting delay in EU/EEA HIV surveillance data

  • We aim to quantify the extent to which these problems are present and to identify specific data characteristics that are relevant for data adjustments. Taking these characteristics into account, we propose methods to adjust for missing data and reporting delay based on literature and existing national practices in EU/EEA countries

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Summary

Introduction

HIV remains one of the most important public health concerns in the European Union and European Economic Area (EU/EEA). Specific HIV-related objectives include the monitoring of testing patterns, late HIV diagnoses, defined by low CD4+ counts (

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