How the Keep Sight initiative aims to overcome inequalities when diagnosing glaucoma

Many low and middle income countries lack resources for managing eye health. A pilot project aims to reduce the number of people going blind from untreated glaucoma by raising awareness and increasing engagement with screening and follow-up.

With the world’s population ageing rapidly, the number of people who are blind could more than triple by 2050. This figure hides a gross inequality: 90% of people with blindness or vision impairment live in low and middle income countries.

Many of these countries lack resources for managing eye health services and public awareness around the concept of diseases with few symptoms, such as glaucoma, is low, despite the disease affecting at least 12 million people in India and around 5% of adults above the age of 40 years in Nigeria.

The Keep Sight initiative, a collaboration between Sightsavers, Allergan and the International Agency for the Prevention of Blindness (IAPB), is a pilot project to develop and implement sustainable and scalable approaches to reduce the number of people going blind due to untreated glaucoma. The project aims to raise awareness of the condition, integrate evidence-based disease management with existing eyecare services and increase the uptake of these services via community engagement and behaviour change.

The project is currently in an investigatory mode, conducting research and situation analysis and trialling different methods and activities. By collecting concrete examples of best practice and success, the hope is for the initiative to be scaled up in a sustainable and cost-effective manner to provide services and treatment to a wider demographic.

There are multiple difficulties in glaucoma diagnosis and treatment and it will take time to improve the situation, especially where long-term treatment is required. This is the start of the journey.

Driving behaviour change through education

Experience from India suggests that targeted screening for glaucoma can be achieved using relatively simple tools. The key challenge is encouraging at-risk individuals to seek screening in the first place and subsequently to comply with further medical advice, which may require further diagnostic tests even before a definitive diagnosis is made. If these people do not visit a health clinic and obtain an early accurate diagnosis and initiate necessary treatment, they could be at risk of irreversible vision loss.

Because glaucoma cases are mostly asymptomatic in the initial stage, existing educational strategies are unable to convince individuals to proactively seek screening and there is no real understanding of the eye condition unless a relative or friend has it. This was evident from a population-based survey in Nigeria, where only 5.6% of respondents with glaucoma knew they had the condition.

Addressing and improving the quality of counselling and advice received in local communities from health workers, friends and families of patients is another key target for the project, as this has a tremendous impact on an individual’s acceptance of and adherence to treatment. We are working with community networks and health practitioners to increase glaucoma awareness and help change the perceptions that patients are powerless to do anything to protect their sight and that vision loss is a normal part of ageing.

This starts with the development of public health messaging. Glaucoma is a complex eye health issue, but we cannot expect an increase in awareness without first explaining the basics in a simple way, avoiding technical language. Here, we have taken a lead from the successes of educational campaigns about hypertension, a high blood pressure condition that is similarly symptomless and can run in families.

Over a decade of public health messaging and community involvement has increased the understanding of hypertension and offers valuable insights into driving behaviour change. We are looking at similarly positioning our professional and public health messaging, capitalising on the existing understanding of the symptomless nature of this condition and the importance of identifying it early.

Our messaging explains what glaucoma is and that it is a common condition, factors increasing the likelihood of an individual having glaucoma – such as a close family member having it – what to look out for in eye health and that blindness from glaucoma can be prevented if the condition is caught early and treated.

We are exploring optimal ways to share public messaging, including trialling outreach via community health workers; this appears to be working well in India but less so in Nigeria, where glaucoma messages become ‘lost’ amongst the better-understood eye health conditions such as refractive error.

We have begun to see an increase in people attending screenings where public health messaging has been successful and supported deeper understanding of the condition, screening and treatment options.

A practical example of educational messaging in action is our glaucoma identification and treatment process flow chart designed for clinicians. This step-by-step model helps eye health professionals navigate the path to tackle this complex condition and helps them describe the process to patients: from screening, to what happens next if they are diagnosed with glaucoma, to the treatment plan.

After the flow chart’s successful use within the Keep Sight programme, it was published in the Toolkit for Glaucoma Management in Africa and well received by eye health professionals for its helpful and digestible guidance.

There is a significant lack of skilled workers available to screen people in the community, and in Nigeria there was no operational glaucoma unit. The capacities of the ophthalmic team in managing glaucoma are being expanded using a mix of training methods provided by a glaucoma specialist and developed in consultation with the practitioners to meet their specific development needs.

The training packages are being assembled into a package of continuing medical education at the West African College of Surgeons and administered on a need and request basis. This provides a good example of how the learning and experience of this project will contribute to improved glaucoma management and understanding in the health system at large.

Adopting new technology

Technological innovations such as low-cost portable retina imaging devices, highly accurate portable tools to measure intraocular pressure, and artificial intelligence-assisted screening tools have played a key role in the success of the Keep Sight initiative to date. Technology speeds up screening and makes services more efficient as well as enabling us to see more people.

Without technology-assisted targeted screening, upskilling ophthalmic service providers, improved standards of practice and improved communication, Keep Sight would not have been able to screen over 23,000 people in the Ganjam district, India, and over 2,400 people in Abuja, Nigeria, from October 2019 through to March 2021.

India had existing glaucoma services through another partner and we are building on that good work. For example, we are improving the use of technology to identify patients with glaucoma, considering artificial intelligence for initial screening and training community health workers to use the technology. Preliminary data show that this is helping increase the number of people attending screenings and being diagnosed with glaucoma, which will in turn help reduce the number of people going blind from the condition in the long run.

COVID-19 mitigation efforts and risks have created significant headwinds and challenges to the implementation of these initiatives in both India and Nigeria. Other factors also complicated the implementation: screening in Nigeria was challenging as there were no routine community screening structures and systems for eye health when Keep Sight started, so new systems and technologies had to be implemented. However, using technology in screening is proving useful in reducing close contact at a time when that is important.

Strong health management information systems (HMIS) need to be implemented into existing processes to enable long-term follow-up of diagnosed cases and send regular reminders for treatment compliance. However, integration must be faced with pragmatism and sustained development plans to scale up professional and technology skills and confidence, as well as availability of human resources at all levels.

We are currently working to upgrade existing HMIS in order to help health professionals track patients over time and ensure ongoing treatment is carried out.

A collaborative, tailored approach

From research we commissioned in Nigeria to understand existing patient behaviour and expectations around glaucoma, it was clear that patient experience is an important factor to improve uptake of services and that people were not receiving adequate information about glaucoma prognosis and treatments. Transforming the current clinical status quo and creating advocates for more in-depth counselling of patients and a new tailored approach to specific patients will be significant as glaucoma requires longitudinal follow-up and needs to be integrated from a primary to a tertiary level to see long-lasting positive change.

There are no quick fixes to addressing the current inequalities in eye-care services. Success requires collaboration by all stakeholders; the implementation of meaningful education and awareness programmes that drive behaviour change around glaucoma screening and diagnosis; and scaling up of the use of appropriate technologies that can innovate clinical and education programmes.

This article was previously published by Ophthalmology Times Europe ®

Authors

Dr Kolawole Ogundimu is Sightsavers’ senior global technical lead for eye health.
Dr Sandeep Buttan is Sightsavers’ global technical lead for eye health in Asia.