The Impact of Trachomatous Trichiasis on Quality of Life: A Case Control Study.

BACKGROUND: Trachomatous trichiasis is thought to have a profound effect on quality of life (QoL), however, there is little research in this area. We measured vision and health-related QoL in a case-control study in Amhara Region, Ethiopia. METHODOLOGY/PRINCIPAL FINDINGS: We recruited 1000 adult trichiasis cases and 200 trichiasis-free controls, matched to every fifth trichiasis case on age (+/- two years), sex and location. Vision-related quality of life (VRQoL) and health-related quality of life (HRQoL) were measured using the WHO/PBD-VF20 and WHOQOL-BREF questionnaires. Comparisons were made using linear regression adjusted for age, sex and socioeconomic status. Trichiasis cases had substantially lower VRQoL than controls on all subscales (overall eyesight, visual symptom, general functioning and psychosocial, p<0.0001), even in the sub-group with normal vision (p<0.0001). Lower VRQoL scores in cases were associated with longer trichiasis duration, central corneal opacity, visual impairment and poor contrast sensitivity. Trichiasis cases had lower HRQoL in all domains (Physical-health, Psychological, Social, Environment, p<0.0001), lower overall QoL (mean, 34.5 v 64.6; p<0.0001) and overall health satisfaction (mean, 38.2 v 71.7; p<0.0001). This association persisted in a sub-group analysis of cases and controls with normal vision. Not having a marriage partner (p<0.0001), visual impairment (p = 0.0068), daily labouring (p<0.0001), presence of other health problems (p = 0.0018) and low self-rated wealth (p<0.0001) were independently associated with lower overall QoL scores in cases. Among cases, trichiasis caused 596 (59%) to feel embarrassed, 913 (91.3%) to worry they may lose their remaining eyesight and 681 (68.1%) to have sleep disturbance. CONCLUSIONS/SIGNIFICANCE: Trachomatous trichiasis substantially reduces vision and health related QoL and is disabling, even without visual impairment. Prompt trichiasis intervention is needed both to prevent vision loss and to alleviate physical and psychological suffering, social exclusion and improve overall well-being. Implementation of the full SAFE strategy is needed to prevent the development of trachomatous trichiasis.

Health Beliefs and Perceptions of Trachoma in Communities on the Bijagos Archipelago of Guinea Bissau.

PURPOSE: The World Health Organization aims to eliminate blinding trachoma by 2020 using the SAFE strategy: Surgery for trichiasis, Antibiotics, Facial cleanliness and Environmental improvement. Trachoma is hyperendemic on the remote Bijagos Archipelago of Guinea-Bissau, West Africa. Sociocultural factors remain unexplored here, despite their potential impact on disease control, particularly through the "F" and "E" aspects. By examining these, we aim to illuminate this population's unreported health beliefs, hygiene behaviors and disease perceptions. This understanding will help to optimize future public health interventions, and guide the distribution of limited healthcare resources. METHODS: Two unmatched interview series were conducted 1 year apart on Bubaque Island in the Bijagos Archipelago; one in rural villages using purposive snowball sampling, the other in a semi-urban settlement, using random-cluster sampling. Interviews were conducted and recorded in Kriolu, the local dialect, by a supervised local field assistant before translation into English for conventional content analysis. RESULTS: Trachoma was unheard of in either series, despite ongoing local trachoma research. A heterogeneous range of disease etiology and preventative measures were suggested, but the importance of hygiene was more widely reported by semi-urban interviewees. Although western medicine was well regarded, traditional practices continued, particularly in the rural populations. CONCLUSIONS: Differences in knowledge, beliefs and behaviors were apparent between the two series. Despite widespread rudimentary knowledge of disease prevention, targeted education might benefit both communities, particularly basic hygiene education for rural communities. Healthcare access should also be improved for rural populations. The impact of these measures could be assessed by future fieldwork.

Patients' Perceptions of Trichiasis Surgery: Results from the Partnership for Rapid Elimination of Trachoma (PRET) Surgery Clinical Trial.

PURPOSE: While quality of life surveys have been conducted in trachomatous trichiasis (TT) surgery populations, little is known about patients' perceptions of the surgical experience and outcomes. METHODS: We interviewed a subset of Partnership for the Rapid Elimination of Trachoma (PRET) surgery trial participants 24 months after surgery. Questions focused on current ocular symptoms, perceived daily functioning, physical appearance, and overall perception of surgery. We stratified participants based on surgical outcomes: normal upper eyelid, postoperative TT, or eyelid contour abnormality (ECA) in one or both eyelids. We compared responses between sexes and surgical outcome groups using contingency tables and Fisher's exact tests. RESULTS: A total of 483 individuals participated and 86% were very satisfied with surgery results; 96% reported ocular symptom improvement. Participants with moderate to severe ECA or postoperative TT were more likely to report current ocular problems than those with normal eyelids (46% and 58% vs 34%, respectively; p = 0.01 for each comparison). The most common symptom among participants with moderate to severe postoperative TT was feeling lashes touching (blurred vision was the most common among participants with moderate to severe ECA). Overall, 83% stated surgery improved daily life; participants with ECA were less likely to report improvement than others (p = 0.002). Participants who had moderate or severe postoperative TT were least likely to state that they would undergo repeat surgery (80%), followed by participants with ECA (86%). CONCLUSIONS: Postoperative TT and ECA both reduced satisfaction with surgery, but appeared to influence different aspects of life. Improving surgical outcomes both by reducing recurrence rates and limiting ECAs are essential.

'A living death': a qualitative assessment of quality of life among women with trichiasis in rural Niger.

BACKGROUND: Prior to blindness, trachoma is thought to profoundly affect women's abilities to lead normal lives, but supporting evidence is lacking. To better understand the effects of trichiasis, we asked women to define quality of life, how trichiasis affects this idea and their perceptions of eyelid surgery. METHODS: Operated and unoperated women were purposively selected for in-depth interviews. These were audio-recorded and transcribed, and codes were identified and applied to the transcripts. Overarching themes, commonalities and differences were identified and matched to quotations. RESULTS: Twenty-three women were interviewed. Quality of life was defined as health, security, family, social status and religious participation. Trichiasis caused severe pain and loss of health, leading to loss of security. This affected social, economic and religious activities and caused burden on their families. Surgery improved quality of life, even in cases of surgical failure or recurrent disease. CONCLUSIONS: Trichiasis disables most women, even those reporting fewer or less-severe symptoms. While women in rural Niger often live in extreme poverty, trichiasis exacerbates the situation, making women unable to work and undermining their social status. It adds to family burden, as women lose the ability to meaningfully contribute to the household and require additional family resources for their care.