Glaucoma is a serious and irreversibly blinding condition of public health importance in Africa. The absence of discrete early symptoms makes the condition hard to recognize by patients. Glaucoma is often referred to as the “silent thief of sight” [1]. The current goals of glaucoma management are to avoid glaucomatous and nerve damage, preserve the visual field, and total quality of life for patients with minimal side effects. The treatment of glaucoma is aimed at the reduction of the intraocular pressure by daily life-long eye drops (medication). Thus, follow-up examinations and judicious selection of treatment is required [2, 3]. People with glaucoma disease often present late for treatment, thus leading to ophthalmologist facing many challenges when managing the disease [4]. Non-adherence to glaucoma treatment resulting in loss to follow-up (LTFU) has been reported in several studies as a global problem [5-7]. Medications non-adherence is a serious challenge and is responsible for many patients losing vision from glaucoma. Studies conducted in Iran, Ghana, and China indicated that approximately 50% of glaucoma patients fail to adhere to their medications as prescribed or adherence to follow-up visits [8-11].

Poor glaucoma adherence has worse outcomes leading to increased healthcare cost and as a result, more follow-up visits, additional medications, more diagnostic tests and also the need for surgery [5, 12]. Patients at high risk for such worsening outcomes are those who believe that they do not need regular follow-up because they take their medications as prescribed and assume they are safe from glaucoma complications. Moreover, most Sub-Saharan African health care facilities (including South Africa) are mostly located far from patients’ home. This makes it difficult for patients with limited financial resources to reach the eye clinics/hospitals. Some patients travel long distance to access the clinics/hospitals for their glaucoma medication [1, 13]. Distance to the eye clinics, inadequate public transportation, poor road networks and mountainous areas were cited as the other reasons preventing glaucoma patients from accessing hospitals [14, 2].

The South African Glaucoma Guidelines, which are in line with those of the International Glaucoma Society, recommend that patients with controlled glaucoma should be seen three times per year, while those with uncontrolled and complicated glaucoma should be seen up to six times a year [15-17]. Although there are large secondary care facilities in the Vhembe District, only one hospital has an ophthalmologist who can diagnose and treat glaucoma patients. All other primary and secondary health facilities in the district refer all glaucoma cases to one hospital [18]. This explains the challenges patients have in adhering to follow-up protocols. Although poor medication adherence is a major problem in glaucoma management worldwide, particularly in Sub-Saharan Africa, little is known about loss to follow-up (LTFU) among African glaucoma patients [11]. It is against this background that this study explored factors contributing to LTFU as experienced by glaucoma patients in the Vhembe District of Limpopo Province, South Africa.

A qualitative, explorative, descriptive research design was used to explore the views of LTFU glaucoma patients at the selected health care facilities in the Vhembe District.

Our study findings reveal that in predominantly rural populations, challenges to follow-up are still reported among patients with chronic diseases such as glaucoma. The study findings add to studies that have been conducted in South Africa about glaucoma. Notably, no known study has explored the barriers faced by glaucoma patients during their follow-up clinic visit. The current study revealed several findings that are similar to other study findings conducted around the globe(Thompson, Thompson, Young et al. [22] Lee et al. [23]. The loss to follow-up was influenced by various factors described by the patients themselves that hinder them from remaining in care. Patients felt that some of the barriers are beyond their control. The reasons outlined included lack of glaucoma awareness or understanding of the disease, unsatisfactory staff attitude, traditional/religious beliefs, financial constraints, difficulty getting time off from work to attend appointments, and shortage of medications. Although patients face many barriers that challenge their remaining in care, they nonetheless suggested strategies that might assist them in re-engaging and remaining in care.

The study found a lack of understanding that glaucoma needed frequent follow-ups like any other disease, such as hypertension and diabetes. Therefore, most glaucoma patients were not aware that they should go for their regular follow-ups. Patients stopped using eye drops and follow-up appointment, assuming that their eyes no longer needed medication because they were not experiencing any pain. This was attributed to the fact that glaucoma is asymptomatic (Zhao et al. [24]. Furthermore, other glaucoma patients were not aware that glaucoma medication is for life, and such patients can live a quality life with good vision if they adhere to their medications like everyone else. Our study findings concur with those by Dagtekin et al. [25], who reported that glaucoma patients were not aware that they needed regular eye examinations. However, Thompson at al [22]. reported that there are patients who believed in eyedrops adherence and follow-up clinic appointments even if there is no vision improvement.

The attitude of health care workers has a lot of influence when it comes to attending follow-up among glaucoma patients in most countries. The study established that some patients become lost to follow up due to the negative attitude of healthcare workers. Patients highlighted that health care workers are impolite and disrespectful towards them during their regular visits. Therefore, to avoid such hostility, patients decided to stay at home and stopped going for their follow-up as scheduled. This finding is similar to Bassett, et al. [26], who reported that in South Africa, the second most highly perceived barrier was poor service delivery in most health facilities. Also, our study concurs with the findings by Abdul [14] and Wasti [27], who discovered that health system factors, including the relationship with service providers, make it difficult to seek regular follow-ups. Patients in the current study complained about the poor doctor-patient relationship. They further explained that poor communication between them and health providers makes it difficult for them to ask for clarity regarding their eye condition. Similar results were reported by Hann [28] and Morse [29], who showed that good patient-physician communication is an essential element in engaging patients with their care. Consistent study findings disclosed that most patients reported that other clinic nurses were rude and disrespectful, and this discouraged them from going back to the clinic [30]. Parallel results were also confirmed by several authors who agree that good patient provider-relationship is an important motivating factor for follow-up care [31-34].

Fewer patients in the study become LTFU because they resort in using traditional eye medications(TEM). They believed that they would be cured by the use of TEM. These patients assumed that glaucoma is caused by witchcraft or evil spirits. Thus, the reasons why they consulted traditional healers and religious prophets for prayers and cleansing. Participants thought the use of TEM or holy water would permanently cure them of glaucoma. Due to these strong religious and traditional beliefs, such patients drop out of care to seek healing from traditional and faith healers. Some participants indicated that they resort to TEM because of the unavailability of glaucoma medications in the local clinics. These findings are in line with the Ugandan and Nigerian studies, which found that patients had poor access to eye care and their beliefs in divine healing contributed to trusting in TEM and the use of holy water [29, 35, 36].

Lack of finances for transportation was the most mentioned barrier contributing to LTFU in our study. Patients mentioned that they did not have transport money as well as administrative costs that must be paid at the hospital. This is especially the case for patients who are not getting any social grants. Long distance to the health facility also increases the high cost of transport fare. Several authors agree that patients and their escorts become non-adherent because of financial difficulties [37-40].The findings of our study concur with those by Thompson et al. [41], who stated that transport and follow-up costs continued to be the contributing factors to LTFU. However, in Philadelphia, Altangerel et al. [42] indicated that the rate of glaucoma LTFU remained poor, irrespective of an attempt by the government to reduce transport costs. Parallel results were obtained by Munro et al. [43], who revealed that some HIV and TB patients become LTFU regardless of having transport money.

Some patients in the current study indicated that they unwillingly dropped out of care due to difficulties in getting time off from work. By the time they knock off, the clinics are already closed. Furthermore, patients revealed that glaucoma clinics in the study area do not operate over the weekends or public holidays. Also, patients complained that the health care staff refused to give them eye drops that can last longer, for at least 2-3 months. Therefore, some patients are left with no treatment to use. Failure to get enough medications leads to non-adherence, which also limits compliance with follow-up appointments. Similar results were reported by Guigley et al. [44] and Thompson et al., [41] in their study. They mentioned that the difficulty of an escort or a patient in receiving time off from work was associated with poor follow-up. These results concur with those by Ankomah, et al. [45] and Bogard, et al. [46] who reported that failure in getting enough medications and difficulty in taking time off from work are barriers for remaining in care for HIV patients.

When it comes to suggestions regarding strategies that can improve glaucoma follow-up care, health education was highlighted as a major strategy that could retain patients in care. Patients are certain that if equipped with the knowledge, they would be motivated to remain in care because they would understand the importance of attending glaucoma follow up. There are a variety of studies that have found that education is the main intervention that helps in improving glaucoma treatment adherence [47-50]. In addition, glaucoma patients in this study suggested that they would appreciate it if glaucoma eye care services can be provided at the primary health care facilities as it would be more accessible to most glaucoma patients. and would help in improving adherence and follow-up. Transport services that can ferry patients from home to the clinic, especially for the visually impaired patients who need an escort, should be provided. Another useful strategy that was not mentioned by the participants in this current study was the use of M-Health. According to most studies in the review, M-health (using electronic interventions such as mobile phone, email, and SMS) was useful in improving glaucoma adherence. The researchers assume that similar M-Health strategies can also have an impact in this study population.

The study was conducted in selected public hospitals in Vhembe District of Limpopo Province and focused on LTFU glaucoma patients only. Therefore, the results might not be generalized to hospitals in other South African provinces. Other researchers may explore the effectiveness of the findings to assist them in their specific situations.

In conclusion, it was found that patients lost to follow-up was a potentially significant problem. Follow up adherence amongst glaucoma patients was negatively influenced by travel cost for the patients/escort from home to the health facilities, difficulty getting time off to attend appointment and shortage of medications, insufficient understanding of glaucoma disease and its treatment and holding to traditional and religious beliefs. LTFU glaucoma patients suggested the following strategies that might help them to remain in care: more education on the serious effects of glaucoma and the importance of follow-up visits, transportation services that bring patients to the clinic and back home, glaucoma eye care services (including the supply of glaucoma medications) provided at the Primary Health Care facilities, affordable transportation like mobile clinics, especially for those patients who rely on escorts due to their poor vision. Future studies are needed to develop interventions that can reduce the identified barriers to follow up.