Disadvantage and the Experience of Treatment for Multidrug-Resistant Tuberculosis (MDR-TB).

In the present research, we aimed to demonstrate how exploring patients’ treatment experiences may help decision makers better understand and pay attention to social impacts of health interventions. We take multi-drug-resistant tuberculosis (MDR-TB) as a paradigm case of a disease that disproportionately affects people already living with disadvantage and for which treatment itself is extremely burdensome. We conducted a total of 140 in-depth interviews with 53 patients, 56 health care providers, and 31 community members.We found that the burdens of MDR-TB treatment described by respondents fell into two categories: those related to managing the medications (n=77) and those related to other aspects of completing treatment (n=52). Respondents also identified social support (n=121), access to essential goods and services (n=74), personal motivation (n=52), and patient knowledge about the relationship between treatment completion and potential cure (n=44) as factors that may either lighten treatment burdens and facilitate completion or add to treatment burdens and inhibit completion. When asked specifically about preferences for MDR-TB treatment advances, respondents favored a shorter course of treatment (n=52) and fewer pills (n=51) over fewer side effects (n=18). According a pattern analysis applied across the data using the core dimensions of social justice we found that experiencing the side effects of MDR-TB treatment tends uniformly to erode all three dimensions. Our findings demonstrate how systematic collection of data about patients’ lived experience can inform decision-making regarding the social impacts of health interventions in at-risk community living with a high-burden of disease from the perspective of disadvantage.