Antiretroviral therapy drug adherence in Rwanda: Perspectives from patients and healthcare workers using a mixed-methods approach

Abstract

Rwanda has achieved high enrollment into antiretroviral therapy (ART) programs but data on adherence after enrollment are not routinely collected. We used a mixed-methods approach (standardized questionnaires, pill counts, focus group discussions, and in-depth interviews) to determine levels of and barriers to ART adherence from the perspective of both patients and healthcare workers (HCW). Data were available from 213 patients throughout the first year on ART; 58 of them and 23 HCW participated in a qualitative sub-study. Self-reported adherence was high (96% of patients reporting more than 95% adherence), but adherence by pill count was significantly lower, especially in the first 3 months. In the standardized interviews, patients mostly reported that they “simply forgot” or “were away from home” as reasons for nonadherence. The qualitative research identified three interrelated constructs that appeared to negatively influence adherence: stigma, difficulty coming to terms with illness, and concealment of illness. Both standardized questionnaires and the qualitative research identified poverty, disruption to daily routines, factors related to regimen complexity and side effects, and service-related factors as barriers to adherence. We conclude that regular triangulation of different sources of adherence data is desirable to arrive at more realistic estimates. We propose that program monitoring and evaluation cycles incorporate more in-depth research to better understand concerns underlying reasons for nonadherence reported in routine monitoring.

Keywords:

• HIV
• antiretroviral therapy
• adherence
• Rwanda

Acknowledgments

The authors would like to thank the study participants, TRAC and LNR staff who worked on the study, Nienke Veldhuijzen, Jules Mugabo, the late Francois Ndamage, John Rusine, Julie Mugabekazi, Janet Butera, Josephine Dusabe, Andrew Musemakweli, Coosje Tuijn, Pascale Ondoa, Robert Meester, Robert Pool, and other colleagues of the INTERACT Program in the Netherlands, Rwanda and Uganda.

This SEARCH study was funded by the Netherlands African Partnership for Clinical Trials and Capacity Building Program (NACCAP) of The Netherlands Organisation for Scientific Research – The Netherlands Foundation for the Advancement of Tropical Research (NWO/WOTRO). The qualitative sub-study was funded by the European and Developing Countries Clinical Trials Partnership (EDCTP). The funders had no role in the study design, data collection and analysis, decision to publish, or preparation of the manuscript. The findings and conclusions in this report are those of the authors and do not necessarily represent the official position of the funders.

Notes

1. On English versions of the transcripts, kwigunga was translated as either “finding closure” or “coming to terms with one's status.”