Retention‐in‐care in the PMTCT cascade: definitions matter! Analyses from the INSPIRE projects in Malawi, Nigeria and Zimbabwe

Abstract

Introduction: Definitions of retention-in-care in Prevention of Mother-to-Child Transmission of HIV (PMTCT) vary substantially between studies and programmes. Some definitions are based on visits missed/made, others on a minimum total number of visits, or attendance at a final clinic visit at a specific time. An agreed definition could contribute to developing evidencebased interventions for improving retention-in-care. In this paper, we estimated retention-in-care rates according to different definitions, and we quantified and visualized the degree of agreement between definitions. Methods: We calculated retention in care rates using nine definitions in the six INSPIRE PMTCT intervention studies, conducted in three sub-Saharan African countries between 2013 and 2017. With data from one of the studies (E4E), we estimated the agreement between definitions using Gwet's agreement coefficient (AC1) and concordance. We calculated positive predictive values (PPV) and negative predictive values (NPV) for all definitions considering successively each definition as the reference standard. Finally, we used a Multiple Correspondence Analysis (MCA) to examine clustering of the way different definitions handle retention-in-care. Results: Retention-in-care rates among 5107 women ranged from 30% to 76% in the complete dataset with Gwet's AC1 being 0.56 [0.53; 0.59] indicating a moderate agreement between all definitions together. Two pairs of definitions with high inner concordance and agreement had either very high PPV or very high NPV, and appeared distinct from the other five definitions on the MCA figures. These pairs of definitions were also the ones resulting in the lowest and highest estimates of retention-in-care. The simplest definition, that only required a final clinic visit to classify women as retained in care, and classified 55% of women as retained in care, had a PPV ranging from 0.7 to 1 and a NPV ranging from 0.69 to 0.98 when excluding the two pairs afore-mentioned; it resulted in a moderate to substantial agreement and a 70% to 90% concordance with all other definitions. Conclusions: Our study highlights the variability of definitions in estimating retention-in-care. Some definitions are very stringent which may be required in some instances. A simple indicator such as attendance at a single time point may be sufficient for programme planning and evaluation.

Measuring patient engagement with HIV care in sub‐Saharan Africa: a scoping study

“…Ultimately, the most appropriate measure depends on the intended purpose of the evaluation [ 22 ]. The use cases overlap with the dimensions of engagement with HIV care: different measures are suited to provide the depth of knowledge required to answer different questions, justifying varying burdens of data collection and analysis.…”

“…Most retention measures were discussed in multiple sources, but multiple thresholds within each measure reduced standardization as different papers used different definitions of “retained” versus “not retained”/“lost to follow‐up” (from 9 weeks [ 88 ] to 180 days [ 49 ] without a visit). Different definitions can result in very different conclusions and the recall period can change the measure of success, worsening the outcomes of more recent time periods [ 5 ]; highlighting the importance of being intentional about how we measure retention for specific purposes [ 22 ].…”

“…New technologies and service structures, such as injectable antiretrovirals and multi‐month dispensing, will also change the dynamics of long‐term engagement. Therefore, the evaluation of engagement needs to reflect the changing dynamics of treatment [ 22 ], the shifting definitions of success [ 1 ] and the evolving needs of people on treatment [ 16 ] to drive service provision that facilitates long‐term, sustained engagement and treatment success [ 1 ].…”

Programmatic Retention in Prevention of Mother-to-Child Transmission (PMTCT) Programs: Estimated Rates and Cofactors Using Different Nonretention Measures

“…6,8,[16][17][18][19][20][21][22][23][24][25] A meta-analysis pooling 6 PMTCT intervention studies in Malawi, Nigeria, and Zimbabwe observed marked variability in retention estimates ranging from 30% to 76% when different definitions were applied within the same data set. 26 This variability makes charting progress and identifying effective interventions challenging across programs.…”

Supply-side readiness to deliver HIV testing and treatment services in Indonesia: Going the last mile to eliminate mother-to-child transmission of HIV

“…In 2010, the World Health Organization (WHO) published the Prevention of Mother-to-Child Transmission (PMTCT) guidelines which were later updated to include recommendations for lifelong ART for all HIV-positive pregnant and breastfeeding women regardless of their CD4 count or clinical stage (i.e., Option B+) [8]. The updated PMTCT strategy is designed to: achieve the elimination of new paediatric HIV infections; ensure all ART-eligible pregnant women receive treatment; and contribute to ending the AIDS epidemic by 2030 [9][10][11]. Testing and treatment targets have been set by the WHO, which recommend countries to aim for 95% coverage of antenatal care (ANC), 95% HIV testing coverage among pregnant women, and 95% treatment coverage for women diagnosed and living with HIV (known as the WHO 95/95/95 target) [12].…”