CHANGES IN ADHERENCE AND PROGRAM RETENTION AND ASSOCIATED FACTORS AMONG HIV-INFECTED WOMEN RECEIVING OPTION B+ FOR PREVENTING MOTHER-TO-CHILD TRANSMISSION OF HIV IN KAMPALA, UGANDA: A MIXED METHODS APPROACH
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Background: Mother-to-child transmission of HIV continues to be the leading cause of pediatric HIV infections. Prevention of mother-to-child transmission (PMTCT) care and treatment strategies have been shown to drastically reduce rates of vertical transmission but attrition along the PMTCT cascade is a persisting issue. One barrier for PMTCT is inconsistent medication adherence and program retention. Option B+ is the current strategy recommended by the World Health Organization (WHO) for PMTCT and includes the provision of combination antiretroviral therapy (ART) to all pregnant and postpartum HIV-infected women, regardless of CD4 cell count or clinical stage, to be continued for life from the time of treatment initiation. Study goal and specific aims: The overall goal of this dissertation was to further the current understanding of medication adherence and program retention of HIV-infected pregnant and postpartum women receiving Option B+ for PMTCT and how medication adherence and program retention may change over time. A mixed methods approach was used to address this goal. Manuscript one aims to summarize the existing Option B+ adherence and program retention literature. Manuscript two aims to measure rates of medication adherence and clinic visit attendance in pregnancy and the postpartum period as well as the effects of various factors on these outcomes for a cohort of HIV-infected pregnant women presenting for care and initiating treatment at Mulago National Referral Hospital. Manuscript three aims to explore the changing experiences of HIV-infected pregnant women and mothers with the Option B+ program at Mulago National Referral Hospital from pregnancy through six weeks postpartum as well as the changes in potential barriers and facilitators to adherence and program retention that may occur over time. Methods: First, a systematic review of the current Option B+ adherence and program retention literature was performed by searching the PubMed, Embase, Global Health and Scopus databases for relevant peer-reviewed studies. Second, routinely collected PMTCT program data were used for a longitudinal analysis of adherence and clinic visit attendance from pregnancy through six months postpartum for a cohort of first-time initiators of Option B+ at Mulgo National Referral Hospital in 2014. Third, a series of longitudinal in-depth interviews during pregnancy and at six weeks postpartum were conducted with a subgroup of HIV-infected pregnant women participating in the “Friends for Life Circles” randomized controlled trial and assigned to receive the standard of care at Mulago National Referral Hospital. Results: The systematic review found that loss to follow-up (LTFU), patient self-report and pill counts were the most commonly used measures of program retention and medication adherence and that these outcomes varied greatly across studies and program implementation settings. The longitudinal data analysis found that a relatively low proportion of HIV-infected women were adherent in pregnancy and that the proportion of adherent women decreased at six months postpartum. A number of factors were found to predict adherence in pregnancy and six months postpartum, but only status disclosure was associated with sustained adherence at both time points. This study also found that postpartum clinic visit attendance remained consistent and that previous PMTCT experience, previous HIV diagnosis, time spent on ART during pregnancy and male partner counseling and testing in antenatal care were predictors of sustained clinic visit attendance at six weeks and six months postpartum. The in-depth interviews found medication adherence and clinic visit attendance to be consistently high among participants, but also identified a number of themes surrounding experiences with ART adherence and the Option B+ program in pregnancy and at six weeks postpartum. Effective messaging and counseling at the time of HIV testing and treatment initiation, support from health workers between clinic visits, HIV status disclosure during pregnancy and a desire for a healthy baby and a healthy life were the biggest motivators for good medication adherence and clinic visit attendance, while concerns with unwanted HIV status exposure, modifying daily routines to prioritize ART adherence and health, concerns with the Option B+ approach and health facility limitations came through as potential barriers to good adherence and clinic visit attendance. Conclusions: The results of this dissertation may be useful as PMTCT clinical care and research teams continue to strive toward the goal of eliminating vertical HIV transmission. First, this work confirms the limitations that exist with pill count adherence measures and should encourage continued efforts to improve and standardize adherence measurements in the future. Second, this work underscores the need for continued monitoring and evaluation of maternal medication adherence and program retention as well as interventions aimed at improving these outcomes. Focusing on strategies for improving ART adherence during pregnancy might be effective for improving and sustaining good adherence and program retention over time. More specifically, increasing effective status disclosure, supporting health workers to provide appropriate guidance during HIV testing and ART initiation as well as throughout pregnancy and addressing the specific needs of HIV-infected pregnant women who work outside the home or desire to work outside the home may be appropriate for improving adherence and program retention in pregnancy and the postpartum period.