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Misinformation drives refusals for trichiasis surgery
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According to researchers, many patients who refuse the recommended and often free surgery for trachomatous trichiasis are driven by a lack of information and education, including incorrectly believing that the procedure requires a long recovery time that will keep them from performing household duties.
That makes it a modifiable factor in surgical outreach projects, said Katherine M. Gupta, MD, assistant professor of pediatrics in the University of Pennsylvania School of Medicine and attending physician in the division of general pediatrics and the Refugee Health Program of Children’s Hospital of Pennsylvania, and colleagues.
Trachoma is an eye disease caused by Chlamydia trachomatis. Common in areas without adequate access to clean water and sanitation, it is the leading infectious cause of preventable blindness in the world, according to the CDC. Untreated trachoma can lead to severe scarring of the inside of the eyelid and eyelashes that turn inward to scratch the cornea, a condition called trichiasis.
Gupta and colleagues used focus groups, interviews with community health workers (CHWs) and individual patient interviews to determine the motivation for patients with trichiasis who refused surgery in a rural region of southern Tanzania. The results were reported in PLoS Neglected Tropical Diseases.
During the study period in 2009, they conducted focus groups in Masai district among nine people who refused surgery and six who initially refused and then changed their minds. In Mtwara Rural district, they identified 575 people who were diagnosed with trichiasis: 464 who underwent corrective surgery and 111 who did not. Among the 111, Gupta and colleagues found that five had been misdiagnosed, leading a total of 106 refusals (18.4%). They obtained information on 89 refusals from CHWs and interviewed 13 of the patients in person.
Reports of poor experiences from acquaintances and family emerged as a major cause of refusals in the Masai group. Others believed surgery was unnecessary because their pain could be managed without it, and some feared that the surgery would cause pain.
Among patients who initially refused but later had surgery, the most common reasons for refusal were fear and skepticism. Upon seeing the fast recovery of their neighbors, many sought the surgery for themselves. Among day-of-surgery refusals in the Mtwara district, the most common reason cited for refusal was a lack of a postsurgical caregiver. This was amplified by the misconception that the recovery period would last up to 6 months, leaving them unable to cook, farm or perform household tasks, Gupta and colleagues reported. Because approximately 75% of participants were middle-aged or elderly women who traditionally handled household chores, the prospect of a lengthy recovery period was seen as unrealistic.
To increase awareness, Gupta and colleagues created a frequently asked questions (FAQ) sheet dealing with issues such as the relationship between trichiasis and blindness, the effectiveness of the surgery vs. medication, length of the recovery time and the fact that the surgery involves only the eyelid and not the eyeball. According to the researchers, subsequent reports from the field indicated that the FAQ sheet was successful in reducing surgical refusals and increasing health worker knowledge.
"This study found that important misinformation exists that limits people from deciding to undergo trichiasis surgery," Gupta and colleagues wrote. "These findings are applicable not only to trichiasis surgery programs but to a broad range of health-related activities implemented at the community level, particularly in developing country settings where access to medical information is limited.” – by Jennifer Byrne
Disclosure: The authors report no relevant financial disclosures.
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