Determinants of corrective upper eye lid surgery refusals among trachomatous trichiasis patients in Ethiopia: a case–control study

Melese Kitu,^1,2 Kebadnew Mihretie² and Taye Abuhay²

¹Eyu-Ethiopia, Kebele 14, Dagmawi Menelik Sub-city, Bahirdar, Ethiopia (Correspondence to Melese Kitu: عنوان البريد الإلكتروني هذا محمي من روبوتات السبام. يجب عليك تفعيل الجافاسكربت لرؤيته.).

²College of Medicine and Health Sciences, Bahir Dar University, Bahir Dar, Ethiopia.

Abstract

Background: Repeated infection with Chlamydia trachomatis causes trachomatous trichiasis (TT). Surgery is the main and preferred method of treatment. However, many people decline surgery despite the availability of free services in nearby health facilities.

Aim: To identify the determinants of surgery refusal among TT patients

Methods: This community-based, case–control study with 676 participants (338 cases, 338 controls) was conducted from 5 October to 17 December 2018. People who had been operated on (controls) and surgery refusals (cases) were selected by systematic random sampling from registration documents. Pre-tested, interviewer-administered, structured questionnaires were used to collect data. We used SPSS, version 23, for the analysis. Multivariate logistic regression was used to identify determinants.

Results: Observing a bad outcome of surgery (adjusted odds ratio (aOR): 3.51, 95% CI: 1.94–6.35) and lack of knowledge about TT (aOR: 1.77, 95% CI: 1.18–2.65) increased the refusal rate for surgery. Having trust in the surgeon (aOR: 0.26, 95% CI: 0.15–0.45), knowledge about eyelid surgery (aOR: 0.32, 95% CI: 0.16–0.64), long duration of trichiasis (aOR: 0.50, 95% CI: 0.31–0.79), decision-making via discussion with the family (aOR: 0.29, 95% CI: 0.13–0.64), frequent epilation (aOR: 0.31, 95% CI: 0.17–0.60) and receiving personal advice (aOR: 0.11, (0.04–0.28) reduced the refusal rate.

Conclusion: Refusing to have TT surgery was significantly related to knowledge, quality of surgery, decision-making capacity and personal influences. A strong system should be designed to reduce unfavourable surgery outcomes as well as to catch and manage poor surgical outcomes.

Keywords: trachomatous trichiasis, surgery refusal, trachoma, eye health, Ethiopia

Citation: Kitu M, Mihretie K, Abuhay T. Determinants of corrective upper eye lid surgery refusals among trachomatous trichiasis patients in Ethiopia: a case–control study. East Mediterr Health J. 2023;29(x):xxx–xxx. https://doi.org/10.26719/emhj.XXXX Received: 27/12/21, accepted: 03/03/23

Copyright © Authors 2023; Licensee: World Health Organization. EMHJ is an open access journal. This paper is available under the Creative Commons Attribution Non-Commercial ShareAlike 3.0 IGO licence (CC BY-NC-SA 3.0 IGO; https://creativecommons.org/licenses/by-nc-sa/3.0/igo).

Introduction

Trachoma, a highly contagious infection caused by the bacteria Chlamydia trachomatis, is the most common cause of eye infections and the eighth most common cause of blindness worldwide (1,2). Repeated infection over many years produces scarring of the inner part of the upper eyelid, which turns the lashes inwards so that they scratch the cornea. When the eyelashes rub on the eye, the condition is called trachomatous trichiasis (TT). Scarring of the cornea impairs vision and causes blindness. Blindness due to trachoma is irreversible once it has occurred, but it can be prevented (3,4).

Trachoma is a public health problem in 42 countries. In 2022, around 125 million people were at risk of blindness due to trachoma and about 1.9 million were either irreversibly blind or visually impaired. It causes about 1.4% of all blindness worldwide (5). The estimated total global burden for TT in June 2022 was 1.7 million (6).

Surgery to correct TT is the main and preferred method in all trachoma blindness control programmes in endemic countries, however some patients – those without entropion (inward turning of the eyelid) and having just a few eyelashes in the periphery – can be managed with epilation (pulling out the eyelashes) (7–9).

Countries will be eligible for consideration of having eliminated trachoma as a public health problem when they have achieved the goal for TT at district level: < 1 case per 1000 total population of trichiasis cases unknown to the health system (10).

In previous years, only 50% of the annual global surgical targets have been achieved. Among the reasons cited by patients for not having the surgery were: lack of time, unavailability of the service, financial constraints for direct and indirect costs, fear of surgery, lack of knowledge and lack of awareness (11–14). Elimination of trachoma as a public health problem is covered in the neglected tropical diseases 2021–2030 road map, which targets global elimination by 2030, in line with Sustainable Development Goal target 3.3 (15).

A 2021 World Health Organization (WHO) alliance report shows that globally 69 266 people received TT surgery, 67% of this was performed in Ethiopia (6). Ethiopia has the highest burden of trachoma worldwide, accounting for 49% of the 136.2 million people at risk globally. In 2021, the WHO reported that almost 460 000 people in Ethiopia required surgery to treat TT (16). From 2015 to 2020, around 628 484 TT operations were carried out. Nevertheless, more than 342 800 people with trichiasis are still at risk of blindness in the country. The prevalence of TT in 2020 was 0.85%, which indicates the need for augmenting the performance of TT surgery and strengthening prevention measures to reduce the number of new cases (17).

Even though TT surgery is provided free or at subsidized cost, only 18–66% of patients agreed to have the treatment (11). A study done in northern Ethiopia showed that nearly one in 2 cases did not utilize TT surgery services (18). A longitudinal study in Gambia showed that only 23% of major TT patients elect to have surgery.

The 2016 trachoma impact survey by the Carter Centre Ethiopia showed the prevalence of TT in Mecha district was 1.9%. From 15 July to 15 September 2017, house-to-house TT screening was carried out in all kebeles (municipalities, administrative divisions) and the campaign report recorded 2275 new TT cases. Only 843 (37.1%) of these had received surgery services within one year (19). Despite being offered surgery free of charge, many refused to have it.

More operations and constructive approaches are needed to achieve TT elimination in the woreda (district). Identifying the reasons for refusing surgery is crucial for TT elimination. Therefore, in this study we aimed to identify the determinants of refusing corrective upper eyelid surgery among TT patients.

Methods

Study design

This community-based, unmatched, case–control study was conducted in Mecha woreda, West Gojjam Zone, Ethiopia, on identified TT patients.

Sample size and sampling procedure

The double population proportion formula was used to determine the sample size at 676 participants.

For this study, refusal to have surgery was defined as a TT patient who has been given the chance (been offered) to be operated on by the health workers but had refused. Cases were defined as individuals aged > 15 years who had been diagnosed with TT and who had been given the chance to be operated on by health workers for corrective upper eyelid surgery but had refused. Controls were individuals aged > 15 years who had been diagnosed with TT and who had been operated on for corrective upper eyelid surgery.

The Central Statistical Agency population projection data for 2017 shows the total population of Mecha district was 372 000. The woreda has 6 urban and 40 rural kebeles (20). According to the district (local) TT patient records, 843 TT patients (controls) who had been operated on were registered in the “service beneficiary registration logbook”, and 1032 TT patients who had had the chance to be operated on but had refused (cases) were registered in the “TT refusal registration logbook”.

The participants were selected by systematic random sampling from the 2017 registration logbooks. First, numbers were assigned to every individual in the log book, and then, using a random number generator, a subset of individuals (participants) was selected for interview. Individuals who were not able to communicate were excluded from the study (e.g. those having a psychiatric illness).

Data collection and tools

A pre tested, interviewer-administered, structured questionnaire was adapted from previous studies and used to collect data (4,11,13–15). The questionnaire was prepared in English and translated to Amharic (local language). Data were collected by 5 nurses and 2 integrated eye care workers (supervisors) who were trained for 3 days by the principal investigator on the study instruments and data collection procedures prior to data collection.

Data management and analysis

The data were entered, cleaned and coded using EpiInfo, version 7. Data were then exported to SPSS, version 23, for further analysis. All required variable recoding and transformation was completed before the final data analysis. First, descriptive statistics were computed to describe the collected data. For the categorical variables, frequency and percent were computed and presented in a table. For the continuous variables, mean and standard deviation (SD) were calculated. Cases and controls were compared via univariate logistic regression and independent t-test. Predictor variables having P-value < 0.2 in the univariate binary logistic regression analysis were entered into the multivariate binary logistic regression model. P-value < 0.05 and 95% confidence intervals (CIs) were used as the cut-off point to identify determinants.

Results

Sociodemographic characteristics

This study was conducted from 5 October to 20 November 2018. A total of 338 corrective upper eye lid surgery refusals (cases) and 338 operated controls were included to the study. Females constituted 197 (58.3%) of the cases and 195 (57.7%) of the controls. The majority of respondents (273, 80.8%) among the cases and 274 (81.1%) among the controls resided in rural areas. Cases and controls differed significantly in age: mean for cases was 48.9 (SD 16.2) years and for controls 52.2 (SD 15.5) years (P = 0.007). There was no significant difference in regard to sex (P = 0.876), marital status (P = 0.891), education status (P = 0.275) or occupation (P = 0.934) (Table 1).

Participant’s condition

Compared with controls, more of the cases had trichiasis in only one eye (OR = 1.68, 95% CI: 1.23–2.40). Mean duration of TT was 5.1 (SD 5.4) years for controls and 3.8 (SD 3.7) years for cases (OR = 0.40, 95% CI: 0.28–0.60). Severe pain due to TT was reported by 79 (23.4%) cases and 109 (32.2%) controls (OR = 0.66, 95% CI: 0.55–0.79). More than half the controls (187, 55.3%) had practised epilation before surgery, whereas only 130 (38.5%) cases had done so (OR = 2.03, 95% CI: 1.49–2.75). The vast majority of the controls (313, 92.6%) said they had trust in the health professionals compared with just under half (165, 48.8%) of the cases (OR = 5.11, 95% CI: 3.19–8.18).

Cases had less knowledge about TT (197, 58.3%) than controls (256, 75.7%) (OR = 2.23, 95% CI: 1.61–3.11). Cases and controls did not differ for access to transport (OR = 0.76, 95% CI: 0.53–1.20). Only 16 (4.7%) cases and 19 (5.6%) controls could move on their own (i.e. needed assistance). Many more controls (243, 72%) had seen a good outcome (success) from surgery than refusals (cases) (141, 41.7%) (OR = 0.55, 95% CI: 0.45–0.68). The vast majority of the case respondents (325, 96.2%) and controls (307, 90.8%) stated that they made decisions about their health and health-related conditions themselves (OR = 0.40, 95% CI: 0.20–0.77). Almost half (161, 47.6%) of the cases and three-quarters (242, 71.6%) of the controls had taken advice from other persons in addition to health workers in regard to undergoing surgery (OR = 0.81, 95% CI: 0.74–0.88).

Determinants of corrective upper eye lid surgery refusal

Variables associated with eyelid surgery refusal in the univariate logistic regression, at P < 0.2, were duration of having TT, getting personal advice, observing a person who had been operated on, knowledge about surgery, knowledge about TT outcome, age, decision-making process in the family, frequency of epilation and trust in integrated eye care workers (Table 2).

Multivariate binary logistic regression analysis showed that those who were more frequent epilators were less likely to refuse surgery (aOR = 0.31, 95% CI: 0.17–0.60). Surgery refusal was 71% lower among patients who decided their health and health related conditions in discussion with family members than those who decided for themselves (aOR = 0.29, 95% CI: 0.13–0.64). Those living with TT for a long time (> 5 years) were 50% less likely to refuse surgery than those who had had it for ≤ 5 years (aOR = 0.50, 95% CI: 0.31–0.79). Respondents who had received personal advice from other sources as well as from health workers were 74% less likely to refuse surgery (aOR = 0.26, 95% CI: 0.14–0.50). Observing poor outcomes of surgery led to a 3.51 times greater likelihood of refusing eyelid surgery (aOR = 3.51, 95% CI: 1.94–6.35). Respondents who had knowledge about eyelid surgery were 68% less likely to refuse (aOR: 0.32, 95% CI: 0.16–0.64). Those who were not knowledgeable about TT were 77% more likely to refuse eyelid surgery than those who were (aOR = 1.77, 95% CI: 1.18–2.65). Refusal to have surgery was 74% lower among respondents who said they had trust in the integrated eye care workers (aOR = 0.26, 95% CI: 0.15–0.45) (Table 2).

Discussion

Refusal to have eyelid surgery diminished with duration of illness. This contradicts the findings of a study done in south Wollo, Mehalsayint district, in which the respondents who had had TT for more than 5 years were 2.56 times more likely not to attend surgery than those in whom the duration of the condition was ≤ 5 years (21). Our findings support those of a study done in southern Tigray, Ethiopia, in which participants who had had trichiasis for > 2 years were 60.2% less likely to refuse surgery than participants who had had the condition for ≤ 2 years (18). In a cohort study in Tanzania on 200 TT patients, surgical coverage at baseline was 16.9%, but one year later the surgical uptake was 44.8% (a reduction of 27.9%) (22). Over time, patients might be requested to attend many surgery programmes, which might increase the probability of making the decision to have the operation. This finding is supported by a study done in northern Ethiopia (23). This might be attributable to the symptoms early on being mild but over time, due to the progressive scarring effect of the bacteria on the eyelid (24), the inturned lashes that scratch the cornea increase in number (minor progresses to major TT) (25), causing severe pain. As the pain increases, patients might be forced to have corrective eyelid surgery treatment to relieve the pain.

Practising more frequent epilation was associated with fewer refusals to have surgery. This is supported by the findings of a study in South Wollo, Mehalsayint, which showed that non-epilators had a 3.22 times greater likelihood of not having surgery than those who had had at least one instance of epilation (21). Even though epilation has an effect comparable to that of surgery for patients with minor TT (< 5 lashes) (9), if it is practised in patients with severe TT, it may become more frequent, adding another load to their day-to-day activities. Consequently, they may choose a treatment that completely cures and gives them respite. Surgery is proven in TT patients to improve the ability individuals to perform productive activities, improve their quality of life and also their vision (26,27). So frequent epilators, probably severe TT cases, may be less likely to refuse the surgery.

We found that refusal to have surgery was lower among individuals who were knowledgeable about the procedure. This is supported by a comparable study from Tanzania which showed that 26% of those accepting to have surgery suggested that better education and advice about the surgery would help to improve services (28). Another qualitative study from Tanzania found that community health workers and patients raised long recovery times, fear of surgery pain and poor anecdotal experiences with surgery as reasons for refusing (29). This was also reinforced by a study done in Basoliben, in which the majority of non-operated respondents (81%) had no knowledge about eyelid surgery (30). Patients who did have knowledge about eyelid surgery knew that surgery was conducted with lidocaine (without pain) (4), takes a short time to complete and requires only a few days to heal and to return to work. This knowledge might help TT patients to decide on accepting to have surgery.

In our study, there was greater refusal to have surgery among individuals who had no knowledge about TT. This is supported by a study done in Tanzania in which 95.7% of surgery acceptors and 87.7% of non-acceptors had knowledge on the progression of TT to blindness (8% less in the non-acceptors) (28). A study on the natural history of TT showed that it is a high risk for blinding corneal opacity (31). Fear of losing vision comes from knowledge about the effects of TT leading to blindness, and could have been a stronger motivator among patients who had been operated on to agree to have the surgery; those who had refused the surgery may have lacked this knowledge.

Refusal to have surgery was lower among those respondents who had trust in the integrated eye care workers. A study in South Wollo showed non-significant results, but a descriptive statistic indicated that 89.6% of respondents among the non-operated and 98.8% among those who had been operated on (9.2% more in controls) had trust in TT surgeons (21). From interviews with 94 surgeons who were still in the programme in West Amhara, 15% mentioned that patients “want an expatriate surgeon (i.e. did not show trust)” as reasons for not presenting for surgery (32). Patients going to the clinic need to have a successful outcome (looking good after surgery), but in clinical trials in the Amhara region, the surgical failure (recurrence) rate varied from 7% to 50%; eye contour abnormalities varied from 19% to 28%; and granuloma varied from 3.2% to 5.6% among surgeons (33,34). Surgeons who had fewer unfavourable outcomes might earn the trust of patients but those who had many unfavourable outcomes might not. Fear of poor outcomes may be one reason for refusing surgery in patients who did not trust TT surgeons.

Refusals were fewer in patients whose deciders for health and health-related conditions were family members compared with themselves as the deciders. Decision-making was the difficult part for many patients in accepting to have surgery (13). Over time, a family member might help to convince non-acceptors to have surgery, and hesitant patients may also be more willing to trust family members.

Getting advice from sources other than (or in addition to) health workers reduces the rate of refusing to have surgery. This is supported by study done in Tanzania which showed that, when another person was involved, 22.3% of respondents among acceptors and 19.2% among non-acceptors (3.2% more in acceptors) agreed to have the surgery (28). This may be due to friends of patients, especially those who had a positive experience of surgery, persuading others to come forward for surgery. In addition, patients could be more willing to trust their leaders. Perhaps this was the reason why most patients who had had the operation were convinced to agree to surgery by kebele leaders and the Health Development Army.

Our study showed that respondents who have seen poor outcomes of surgery were more likely to refuse eyelid surgery. This is supported by a study in Tanzania in which patients in a focus group discussion raised, as a reason for refusing surgery, wanting to see how others in the village did after surgery, and when they saw the rapid recovery of their neighbours, they wanted the surgery for themselves (29). A study in West Amhara showed that, among 94 surgeons who were still in the programme, 9.5% thought that poor surgical quality was one reason for patients not presenting to the clinics (32). Patients who had a positive experience of surgery were the best ambassadors to their communities in terms of persuading others to come forward for surgery. Successful surgery patients would be strong voices in helping to convince the non-acceptors. In contrast, if people see poor outcomes in persons who had had the operation or hear horrible stories about surgery, this might have an effect on their decision whether to undergo surgery.

The study had some limitations. We included TT cases who had been identified by health workers before the data collection. Since the information was collected from controls who had been operated on, the TT severity grading was not measured. There may also have been a certain level of recall bias.

Conclusion

In conclusion, refusing the TT surgery services was significantly related to knowledge, quality of the procedure, decision-making capacity and personal influences. So, offering health education and increasing community awareness about trachoma and its treatment should be encouraged. Poor outcome surgeries are negative provokers of surgery. A strong system should be designed to reduce unfavourable outcomes of surgery as well as to catch and manage poor surgical outcomes.

Acknowledgements

We would like to express our gratitude to Bahir Dar University College of Medicine and Health Sciences and School of Public Health, the data collectors, study participants, administrators and health professionals in each health institutions for giving us important data. We also wish to acknowledge Adugna Alemu and Gedefaw Baze for their contribution in data entry.

Funding: This research work received no funding from any funding agency.

Competing interests: The authors have no competing interests to declare.

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Table 1. Distribution of sociodemographic characteristics of participants, individuals aged > 15 years from Mecha woreda who had been diagnosed with TT, 2018

P-values from independent t-test and univariate logistic regression.

Cases had been offered corrective upper eyelid surgery but had refused.

Controls had been operated on for corrective upper eyelid surgery.

Table 2. Bivariate and multivariate binary logistic regression on determinants of corrective upper eyelid surgery refusals among trachomatous trichiasis (TT) patients

Cases had been offered corrective upper eyelid surgery but had refused.

Controls had been operated on for corrective upper eyelid surgery.

cOR = crude odds ratio.

aOR = adjusted odds ratio.

CI = confidence interval.

IECWs = integrated eye care workers.

*Statistically significant in multivariate analysis (P < 0.05).