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

<div><p>Background</p><p>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.</p><p>Methodology/Principal findings</p><p>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.</p><p>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.</p><p>Conclusions/Significance</p><p>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.</p></div

Day-of-Surgery reasons for refusal given by trichiasis patients.

<p>Day-of-Surgery reasons for refusal given by trichiasis patients.</p

Reasons for refusal: Comparison between focus groups and Day-of-Surgery interviews.

<p>Reasons for refusal: Comparison between focus groups and Day-of-Surgery interviews.</p

Day-of-Surgery reasons for refusal reported by community health workers.

<p>Day-of-Surgery reasons for refusal reported by community health workers.</p

Eyelid contour abnormality definitions.

<p>Eyelid contour abnormality definitions.</p

Comparison of predicted versus true location of recurrence at 6 weeks post-operatively.

<p>CI: Confidence Interval.</p>*<p>Prediction of recurrence location based on masked evaluation of immediate post-operative photos.</p

Comparison of predicted versus true recurrence at 6 weeks post-operatively.

<p>CI: Confidence Interval.</p>*<p>Prediction of recurrence based on masked evaluation of immediate post-operative photos.</p

Immediate post-operative photographs used to correctly predict recurrence.

<p>Immediate post-operative photographs in 6 participants used to correctly predict A–B) nasal, C–D) central, and E–F) temporal recurrence at 6-weeks post-operatively. Arrows show area of under-rotation and subsequent recurrence.</p

Photographs of an eyelid with an eyelid contour abnormality A) before and B) after granuloma excision.

<p>Photographs of an eyelid with an eyelid contour abnormality A) before and B) after granuloma excision.</p

Replacement of sutures corrects eyelid margin over-rotation.

<p>A) An immediate post-operative photograph of a participant with over-rotation of the eyelid margin fragment; B) The same eyelid after replacement of the rotating sutures; C) the same eyelid at the 6-week visit with a mild ECA.</p