Let the numbers talk

GA is a leading cause of visual impairment affecting 5 million people worldwide. As the result of population growth and ageing, the numbers of people affected by AMD and GA are expected to increase considerably over the next few decades.  GA is responsible for approximately 20% of all cases of legal blindness in the United States and 26% of cases in the United Kingdom. With no approved treatments to prevent or slow its progression and the number of people affected expected to increase, GA represents a significant unmet medical need.

Many studies have been conducted reporting prevalence and/or incidence data for late- AMD (GA and neovascular AMD) in different countries and regions around the world. As the numbers of those impacted by AMD and GA are forecast to increase in the decades ahead, in line with population growth and ageing, it is increasingly important to gather current statistics on a national and regional basis to inform healthcare policy and research into the future.

It is also critical to collect data associated with the burden of AMD and GA, both from the perspective of the individual and society. In order to guide policy decisions appropriately, burden data must include both direct and indirect costs.

Data collection efforts should serve the needs of their two primary audiences: decision makers and researchers. Decision makers include planners, policy makers, and monitoring staff in governments, as well as global, regional, and national public health experts, funding agencies, and civil society organisations. These users need information about data sources and analysis methods, including key assumptions and limitations, in a way that is accessible without advanced training in statistics.  Researchers require a higher degree of detail about methods, so that they can fully understand and potentially reproduce studies and advance methods.


Retina International are working in collaboration with stakeholders in the design of a research study to focus on the prevalence, impact and burden of Inherited Retinal Dystrophies. If you would like to learn more about this work and how you might be able to contribute please contact us directly info@retina-international.org

A key element of any advocacy effort is the collection and presentation of reliable and robust data in a clear and concise manner. To ensure that data are accurate and reproducible Retina International recommends that researchers follow best practice rules when gathering data. The “GATHER” working group was convened by the World Health Organization (WHO) in 2014, with the aim to define and promote good practice in reporting health estimates. The Guidelines for Accurate and Transparent Health Estimates Reporting (GATHER) Statement defines best reporting practices for studies that calculate health estimates. Further details are available on the GATHER website.

GATHER Statement - LancetGATHER ChecklistThe GATHER Statement: Explanation and Elaboration

Screening & early intervention

Screening, in medicine, is a strategy used in a population to identify the possible presence of an as-yet-undiagnosed disease in individuals without signs or symptoms. This can include individuals with pre-symptomatic or unrecognized symptomatic disease. As such, screening tests are somewhat unusual in that they are performed on persons apparently in good health.

Screening interventions are designed to identify disease in a population or a specified ‘at risk’ sub-population early, thus enabling earlier intervention and management with the aim to reduce morbidity, mortality and suffering from a disease. Several types of screening exist: universal screening involves screening of all individuals in a certain category (for example, all children of a certain age). Case finding involves screening a smaller group of people based on the presence of risk factors (for example, because a family member has been diagnosed with a hereditary disease).

Careful thought and consideration must be given to any efforts to introduce screening. Critical questions around the introduction of screening might include:

  • Group to be screened – those >50 years, those with a family history, etc.
  • What can be done if an issue is identified – availability of therapeutic interventions, accessing vision rehabilitation services, etc.
  • Cost to the healthcare system – how will the costs of screening be covered? What infrastructural investments will be required? etc.

Without screening, diagnosis of disease only occurs after symptoms develop. However, disease frequently begins long before symptoms occur. This is the case in AMD, where symptoms usually only appear in the later stages of the disease.

Screening for eye disease typically involves a dilated eye exam and enables Eye Care Professionals to uncover common abnormalities of the visual system and related structures, as well as less common but extremely serious problems, such as ocular tumours. This evaluation can also uncover evidence of many forms of systemic disease that affect the eyes, like hypertension and diabetes. With appropriate intervention, potentially blinding diseases such as glaucoma, cataract and diabetic retinopathy often have favourable outcomes. Screening creates greater opportunity for early treatment and preservation of vision and has the added very important benefit of enabling affected individuals to prepare for the potential of future visual impairment, giving them the time and opportunity to develop strategies and plans to maintain their independence and quality of life.


The approach to introducing screening programmes differs between different countries. In some instances organisations may make recommendations, but ultimately the cost of screening is born buy the individual. In other cases governments and/or private health insurers may cover the costs associated with screening.  In all cases screening should provide more benefit than harm at a reasonable cost. In 1968 the World Health Organization published guidelines on the Principles and practice of screening for disease, which are often referred to as Wilson’s criteria. In 2008, with emergence of new genomic technologies, the WHO synthesised and modified these criteria with the new and updated understanding.


Clinical guidelines & care pathways

A clinical guideline is a document guiding decisions and criteria regarding diagnosis, management, and treatment in specific areas of healthcare. They are based on an examination of current evidence within the paradigm of evidence-based medicine and usually include summarized consensus statements on best practice. Typically a guideline will be published by a global learned medical organisation, after consultation with a range of care providers in the area of interest.

A care pathway pulls together all of the disparate parts of a patient’s care associated with a particular condition, pulling together relevant elements of all of the associated clinical guidelines. (As an example a care pathway for AMD may include diagnosis, monitoring, therapeutic intervention and tertiary services across a range of medical, psychological and social professionals.) It is one of the main tools used to manage the coordination and standardisation of care processes across all settings. Their implementation reduces variability in clinical practice and improves outcomes. Care pathways can range in scope from simple medication utilization to a comprehensive treatment plan. Care pathways aim for greater standardization of treatment regimens and sequencing as well as improved outcomes, from both a quality of life and a clinical outcomes perspective.

Within the eye care setting there is a need to develop appropriate care pathways addressing the complexity of the challenges that face patients and their carers. The aim of the care pathway should be to focus on the patient’s overall journey, rather than the contribution of each specialty or caring function independently. They must all be shown to be working together for the benefit of the patient. This is particularly so given the nature of the gradual decline in vision over years and decades and the co-morbidities associated with vision loss.

To help you to manage your own care it is helpful to have an understanding of what you should expect in terms of care at each stage of the disease.

Guide to essential care for AMD


Care pathways have been developed in some regions.

GUIDELINES - RANZCO - Pathway for AMD Screening and ManagementGUIDELINES - RCOPHTH - AMD Guidelines for Management

Investing in supports

As the standard of medical care improves, and the average lifespan increases, the impact of vision impairment on society will grow. To address this growing issue, suitable supports for those impacted are required. Low vision services that aim to improve functional ability, quality of life and psychosocial status in those with visual impairment are required. Low vision services should enable people with loss of vision to regain or maintain as much independence and autonomy as possible, and can include rehabilitation, visual aids, emotional support and advice.

Low vision impacts on every part of a person’s life. It is associated with falls, reduced capacity to carry out everyday activities, the need for residential care and is one of the strongest risk factors for functional status decline in community living adults. Evidence suggests that low vision services significantly reduce visual disability and are associated with positive patient outcomes. Furthermore, for the relatively small costs of low vision aids, there can be huge cost saving in terms of health and social care support.

Patient Quality of Life (QoL) surveys have been used to assess low-vision rehabil itation programmes. Research in Australia on the impact of a multi-disciplinary approach for adults attending low-vision rehabilitation for the first time demonstrated considerable benefits for affected individuals. At an average of just over 80 years old, the majority of those surveyed had Age-Related Macular Degeneration and were moderately to severely vision-impaired, but with access to tailored services such as occupational therapists, braille, low-vision devices, and talking books, the researchers found significant improvements in the overall QoL, with the highest impact on emotional well-being.


In order to advocate for access to and improvement of low vision services data is required to unequivocally demonstrate the value that such services bring to the individual and wider society. Where practical and appropriate, Retina International recommends that data should be gathered from existing services and new services to demonstrate the important role that provision of low vision services play in the overall healthcare of the affected individual, their family and their community.

Retina International are working in collaboration with stakeholders in the design of a research study to focus on the prevalence, impact and burden of Inherited Retinal Dystrophies. If you would like to learn more about this work and how you might be able to contribute please contact us directly info@retina-international.org

Courtesy: Retina International

Public & patient involvement

Patient and public involvement – commonly shortened to PPI – is a framework to give lay people an effective and active role in all forms of “healthcare research”.

When using the term ‘patient and public’ we include potential patients, carers and people who use healthcare services as well as people from organisations that represent people who use these services. Whilst all of us are actual, former or indeed potential users of healthcare services, there is an important distinction to be made between the perspectives of the patient/public and the perspectives of people who have a professional role in healthcare, be they clinicians, researchers, regulators, payers or policy makers.

The cornerstone of PPI is that research is being carried out ‘with’ or ‘by’ members of the public rather than ‘to’, ‘about’ or ‘for’ them. Having patients and the public involved as partners in research should lead to the development of treatments and services that better meet people’s needs and are more likely to be put into practice.

In this context Retina International believe that PPI should be a cornerstone of all innovation programs in the retinal space. We recommend that “healthcare” is defined as widely as possible, to include medical care, public health, and social care, and “research” covers all stage of the product/service development lifecycle, including basic science, pre-clinical and clinical development, regulatory and reimbursement processes and service delivery.

The purpose of PPI must be to align research more closely with the public’s needs and thus make it less likely to fail, more effective, and more cost-effective.

Today patients and the public already take part in research, but usually as participants in a study, where researchers collect data about them and their health. PPI should create an active partnership between the patient/public and researchers, with the voice of the patient/public contributing throughout the research process. PPI occurs when the patient/public work in partnership with researchers in setting priorities for research, in planning and managing research studies, as well as in summarizing, distributing, sharing, and putting results into practice.

PPI is an important step in ensuring that the real life experiences of patient/public are considered when decisions are being made about what research to do, what are the most important questions to be answered, how to design studies that patients are more likely to both take part in studies and stay involved in, what constitutes a good outcome, what clinical endpoints are relevant and what value should be placed on a particular treatment or service.

Measuring “value” is a particularly contentious issue where one may be talking about gradual deterioration and/or loss of vision over decades and the burden of all of the associated implications of vision loss. As these costs are typically not borne by public healthcare systems, quite often they are ignored in any economic cost-effectiveness analysis.


27. Wong WL, Su X, Li X, Cheung CM, Klein R, Cheng CY, Wong TY. Global prevalence of age-related macular degeneration and disease burden projection for 2020 and 2040: a systematic review and meta-analysis. The Lancet Global health. 2014;2(2): e106-116.

28.  Colijn JM, Buitendijk GHS, Prokofyeva E, Alves D, Cachulo ML, Khawaja AP, et al. Prevalence of Age-Related Macular Degeneration in Europe: The Past and the Future. Ophthalmology. 2017.

29. Holz FG, Strauss EC, Schmitz-Valckenberg S, van Lookeren Campagne M. Geographic atrophy: clinical features and potential therapeutic approaches. Ophthalmology. 2014;121(5): 1079-1091.

30. Wilson, JMG; Jungner, G (1968). “Principles and practice of screening for disease” (PDF). WHO Chronicle. Geneva: World Health Organization. 22 (11): 473 Public Health Papers, #34

31. Anne Andermann, Ingeborg Blancquaert, Sylvie Beauchamp, Véronique Déry Revisiting Wilson and Jungner in the genomic age: a review of screening criteria over the past 40 years: Bulletin of the World Health Organization; 2008 Volume 86, Number 4, April 2008, 241-320 http://www.who.int/bulletin/volumes/86/4/07-050112/en/ Accessed 26 October 2017.