Why do patients refuse trichiasis surgery? Lessons and an education initiative from Mtwara Region, Tanzania

Background: Trachomatous trichiasis is one of the leading causes of preventable blindness worldwide. A relatively simple surgery can spare vision. Although this surgery is usually performed free of charge in endemic regions, multiple studies indicate that surgical refusal is common. Prior studies have attempted to examine these reasons, although they generally rely on patient recall months to years after the surgery was offered. This study set out to determine major decision-making factors at the time of refusal. In addition, this study looked for ways to help increase surgical uptake by targeting modifiable factors. Methodology/Principal findings: We used a combination of focus groups, interviews with community health workers, and individual interviews with trichiasis patients who refused surgery to understand their decision-making. We found that several factors influenced surgical refusals, including misconception regarding recovery time, inability to find a post-surgical caregiver, and the time of year of the surgical campaign. Fear of the surgery itself played a minimal role in refusals. Conclusions/Significance: Trichiasis patients refuse surgery for many reasons, but a large percentage is due to lack of information and education, and is, therefore, modifiable within the structure of a surgical outreach project. To address this, we developed a “frequently asked questions” (FAQ) document aimed at community health workers, which may have helped to decrease some of the misconceptions that had led to prior refusals.