Barriers to Cataract Surgery in Africa: A Systematic Review.

Cataract remains the leading cause of blindness in Africa. We performed a systematic literature search of articles reporting barriers to cataract surgery in Africa. PubMed and Google Scholar databases were searched with the terms "barriers, cataract, Africa, cataract surgery, cataract surgical coverage (CSC), and rapid assessment of avoidable blindness (RAAB)." The review covered from 1999 to 2014. In RAAB studies, barriers related to awareness and access were more commonly reported than acceptance. Other type of studies reported cost as the most common barrier. Some qualitative studies tended to report community and family dynamics as barriers to cataract surgery. CSC was lower in females in 88.2% of the studies. The variability in outcomes of studies of barriers to cataract surgery could be due to context and the type of data collection. It is likely that qualitative data will provide a deeper understanding of the complex social, family, community, financial and gender issues relating to barriers to uptake of cataract surgery in Africa.

INTRODUCTION

According to the World Health Organization (WHO), 39 million people worldwide are blind and cataracts remain the leading cause of blindness in low and middle incomes countries.1 The WHO and the International Agency for the prevention of blindness launched the VISION 2020: Right to Sight initiative in 1999 to reduce the burden of avoidable blindness. One of the major targets was cataracts.

Subsequently, many surveys have been published highlighting the magnitude of cataract related vision loss in Africa. However, Africa remains the continent with the lowest cataract surgical rate (CSR), defined as the number of cataract surgeries done per million population per year. There has been considerable research on the barriers to use of existing cataract surgical services in Africa. In this review of the literature, we evaluate the barriers to cataract surgery in Africa to identify key themes. This information may aid programs aiming to increase the uptake of cataract surgical services.

METHOD

A systematic review of the available literature was performed using PubMed and Google Scholar. Search terms included: “Barriers, cataract, Africa, cataract surgery, cataract surgical coverage (CSC), and Rapid Assessment of Avoidable Blindness (RAAB).” The search was limited to articles published between 1999 and April 2014.

The references in the articles were also reviewed to identify other articles that may not have been identified by the search terms.

In reporting on the barriers in the studies, we attempted to use the cataract patient's perspective; a patient must first know that there is a problem, what the problem is, and what to do about the problem (knowledge and awareness); once aware of the problem the patient needs to address the logistical steps needed to use the service. This includes distance (and transport) to the service, fees to use the service, requiring an escort to use the service, and being advised by the service providers when it is appropriate to use the service (or to wait). In general, the eye care service has to make the service accessible to the population by reducing transportation issues, setting reasonable prices for the population, and to offer the service as patients require. The final step is to ensure that the patient and the family will accept the service. Poor acceptance can be due to fear of surgery (some of which may be due to poor quality service and some due to incorrect assumptions regarding surgery), or no perceived need, or to a perception that advanced age means that surgery is unnecessary, or that blindness is “God's will”.

Finally, as female gender is a recognized risk factor for lower utilization of cataract surgical services, all quantitative surveys of CSC were reviewed for any gender differences.

RESULTS

In total, 86 articles were identified of which 12 were RAAB studies.2345678910111213 In addition, there were 10 quantitative studies14151617181920212223 and 5 qualitative studies2324252627 of barriers to utilizing cataract surgical services.

Although the RAAB survey includes questions on barriers to cataract surgery not all publications report these findings. Among the 12 published RAAB surveys2345678910111213, data on barriers to cataract surgery were only available in 9 articles.2345678910 Among these publications2324252627 the outcomes varied considerably [Table 1]. However, variables related to awareness and access were more commonly reported than variables related to acceptance.2345678910

Table 1

Findings from RAABs: Percentage of patients who did not undergo cataract surgery reporting the reason for not accepting surgery

The other (non-RAAB) surveys of barriers were performed among different population groups, and not all were population-based surveys [Graph 1].14151617181920212223 Although there was considerable variability in the findings, cost (both direct and indirect) was the most commonly reported barrier in 6 of 10 studies.141518192022

Graph 1

Findings from other surveys of cataract barriers (%) Numbers add up to >100% and respondents could respond to more than one barrier

Finally, there were five qualitative studies of barriers [Table 2].2324252627 These studies2324252627 were performed in Tanzania and Kenya. These studies2324252627 suggest that complex emotional and social interactions exists within the family network that influence the mobilization of financial resources to use cataract surgery. Elderly patients place the financial needs of their children ahead of their own and do not wish to be considered a burden.26 The uptake of surgery was also affected by the perceived need for surgery.24 Males had a higher perceived need than females who tended to suffer their disability in silence.26 Despite the difficulty in accessing funds, these studies24 found that patients were willing to pay for cataract surgery. This willingness increased when knowledge of the actual cost of surgery and trust in that service improved.24 Cost was found to be a convenient explanation that is unchallenged by health care workers when asked about reasons for not undergoing cataract surgery.25 The Kenyan study23 found that patients with poorer visual acuity were only slightly more likely to accept cataract surgery while the lower quality of life scores were consistently associated with increased uptake of cataract surgery.

Table 2

Findings from qualitative studies of barriers to cataract surgery

There were 17 surveys2367891011121314162829303132 providing information on CSC and findings for both males and females. In 15 (88.2%) of these surveys, the CSC among males was higher than in females; for all surveys2367891011121314162829303132 the average difference between male CSC and female CSC was 9.42%.

DISCUSSION

To adequately perform this systematic literature review, four sets of publication types required collection and compilation. Each type of publication offers different perspectives on the topic of barriers to cataract surgery in Africa. Review of the different perspectives enhances the discussion on barriers to cataract surgery in these and other settings. The variable findings in this review may be due to a number of factors, including the context in which the study was undertaken. The type of study may also have contributed to the variable findings.

Rapid assessment of avoidable blindness has the advantage of being standardized and population-based; a significant disadvantage, however, is the fidelity of the findings. In the RAAB, the question on barriers is asked of all people with a cataract causing vision loss of 6/18 or worse in one or both eyes. There is good evidence25 that, because the question “Why have you not had surgery?” Can be very sensitive people may provide an answer that will not cause embarrassment or be challenged by the interviewer (generally an eye care provider). In this case obtaining an accurate response may be quite difficult. This appears to be particularly true with the response to “cost of surgery”. For example, researchers in Tanzania found that, among those reporting cost as the primary barrier, when cost was removed as a barrier over 77% of patients still refused surgery.25

Rapid assessment of avoidable blindness studies combine the findings from people with bilateral and unilateral cataract and those with blinding cataract (<3/60) with those with a visually significant cataract (6/24–6/60). However, this weakens the interpretation of the findings, and it is likely that the barriers are different according to vision and laterality.

The second set of data on barriers were from a mix of population-based surveys or institution based surveys. Collection of data varies in these settings, and some of the same strengths and weaknesses found in RAAB studies are evident in other population-based surveys.

Due to the sensitive nature of questioning people about reasons they have not undergone surgery, qualitative data collection is likely to be the most valuable approach. Current qualitative literature on the topic remains limited to a few settings. However, findings from these settings may not be applicable to other regions in Africa.

Gender differences in CSC provide strong evidence of continuing gender-specific barriers faced by females in most African countries. This work has been summarized globally, in 200233 and in 2008.34 Similar to global findings, data from Africa indicate that in almost 90% of surveys on both genders report a lower CSC for females. Gender inequity was also reflected in the qualitative studies, which may be due to gender-defined social roles within the community. Females may have less access to money and the perceived need lower for improved vision due to their roles in the household and community.35 According to a study26 in Tanzania, males express their need for better sight more strongly than females. Females tended to hide their disability and suffer due to fear of being seen as a burden and they also felt shame in asking their children for support.26 Some elderly cataract patients may see more benefit in ignoring their need for sight compared being perceived as “ill” to mobilize resources to negotiate support for surgery that may take weeks to years.26

All of these studies illustrate that barriers exist both in the community and within the health care system. A study from South Africa evaluated the causes of the lack of commitment from a hospital staff and management to increase CSR.36 The factors included: insufficient operating theatre time, nursing staff unfamiliar with high volume cataract surgery and surgeons performing nonsurgical related work (screening, refractions, administration).36 Similar health system based issues were reported in Ethiopia19 and some studies37 have highlighted the changes made to the health system and the subsequent increase in CSR. The assumption in these settings is that the health system changes addressed specific barriers that were noted through formal research.1937

While “cost” is a commonly reported barrier in many surveys, evidence suggests that making surgery free-of-charge does not significantly increase use of cataract surgery in Africa.2426 Included in the definition of “cost” is the fee charged for surgery (direct cost) and the indirect costs needed to use the service (e.g., transport, escort, meals and accommodation). Without substantial government investment in cataract surgery, offering free cataract surgical services in Africa is not sustainable. Different fee schedules have been adopted in some hospitals, critically, base fees need to be set within the capacity of the population to pay. In many settings this calculation is based on 80% of households and waiver systems are used for those too poor to pay at all.25 However, the cost may be hiding a deeper and more complex issue. While the capacity to pay can be calculated, the role of the family in the decision-making process and the willingness to pay can be more difficult to assess. In 2005 when counseled on the actual cost of surgery, 20% of patients, who initially stated price as a reason for not having surgery, subsequently returned with funds.25 These funds were obtained from family members and the willingness of patients to pay for cataract surgery is linked to the highest perceived amount of financial support elderly patients feel they can ask from their children and relatives.24

Reducing direct costs may be achieved by increasing productivity and by implementing a tiered payment system to subsidize the poor. Some centers have attempted to package direct and indirect costs (including transport and medication) into one all-encompassing fee. The indirect costs may be reduced by “outreach teams” going into the communities and screening and transporting a busload of cataract patients back to the base hospital for surgery. These outreach teams are closely linked to the hospital and provide qualified staff to make good clinical decisions in the field to prevent unnecessary referrals to the hospital. They provide a “patient friendly” one stop service and the site of the camp is chosen based on population distribution, is well advertised and occurs at regular intervals.37

Although none of the studies directly addressed the question of trust in achieving a good outcome, it likely remains a significant barrier given the often poor cataract surgical outcomes reported from population-based studies. Poor outcomes create distrust in the service and fear of surgery. These legitimate concerns could also harm cost recovery efforts as the perceived value of cataract surgery would be reduced. Bias in reporting likely accounts for the lack of information on the impact of poor outcomes cataract surgery acceptance rates.

In summary, while there are numerous studies of barriers to use of cataract surgical services, the tendency to tackle the question from a quantitative perspective may not be ideal. Quantitative data may not reveal the true issues preventing the uptake of surgery, either due to a lack of willingness of respondents to criticize health providers or to embarrass themselves or others. To this end, qualitative work likely presents a better understanding of some of the complex social, family, financial, community and gender interactions in these settings. Further studies are required to understand the role of poor outcomes and uptake of cataract surgery and to understand how families make decisions regarding seeking care. The high CSC found in some settings in South Africa, Libya, and Kenya suggest that many barriers to surgery can be overcome. There is no single approach and multi-system and long-term efforts are required.