November is Diabetes Awareness Month and November 14^th marks World Diabetes Day. This month, the DR Barometer acknowledges the over 537 million people living with diabetes, representing over 10% of the global population, of which 1 in 5 will develop related eye diseases. 

Diabetes is a complex disease, with varied causes and types (e.g., type I, type II, gestational), onset across the lifespan, and complications which can affect the whole body, from head to toe.  According to the World Health Organization, complications from diabetes include blindness, kidney failure, heart attacks, stroke, and lower limb amputation. 

The prevalence of diabetes is rising globally, particularly in low-and-middle-income countries.  The International Diabetes Federation estimates that 6.7 million deaths have occurred due to diabetes in 2021. That’s 1 death every 5 seconds due to diabetes.  Staggering death rates are only the beginning of this story, with many more millions of people living with undiagnosed diabetes.  Regrettably, the onset of life-altering complications, such as diabetic retinopathy, maybe the first point of a diabetes diagnosis.  Findings from the DR Barometer Program suggest that a late diagnosis is associated with uncontrolled diabetes and advancing disease progression.  

Diabetes can be managed with medication and lifestyle changes, such as adequate physical activity and a good diet.  Regular screening and primary care can help to prevent and/or identify complications in their early stages, including those of vision that can lead to blindness. 

Despite good management and treatment being available in many countries, overall substantial improvements are required globally.  In all countries regardless of the GDP, disparities in health outcomes persist, particularly for marginalized communities.  Studies find that those with lower socioeconomic status are more likely to develop type II diabetes, experience complications, and die sooner, compared to those with higher socioeconomic status.  Across the globe and in health systems, reducing the burden of diabetes is an ongoing challenge. 

The reasons for the state of diabetes care are complex and diverse.  Firstly, health promotion and prevention are largely deprioritized across global health systems, resulting in a lack of education, awareness, and health promotion efforts to ensure healthy lifestyles which prevent the onset of diabetes itself, or its serious complications.  In the case of diabetes-related eye diseases, many national health systems lack the infrastructure, health system capacity, or appropriately trained healthcare professionals to provide regular eye screening programs to identify vision complications in the early stages. Even if such guidelines and programs exist, many people with diabetes are not aware of the need for regular eye exams to prevent vision complications.

Secondly, there is a lack of access to primary care services which serves as the first point of care for diagnosis, management, and education on the prevention of more adverse consequences of diabetes, as well as a starting point for navigating the health system should you need to be referred to specialist care.  Referral to secondary or tertiary levels of specialty care is often very complex, placing a burden on the patient and their families to navigate the system of accessing specialist care, long wait times, with the added impediment of a lack of information and time with healthcare providers.  Furthermore, such inefficiencies place a burden on the health system itself and its providers.  Integration of diabetes care must be a priority, along with ensuring access to the best available preventive measures and treatments.

Improvements can be made across health systems globally to ensure adequate diabetes care for all.  This Diabetes Awareness Month, the DR Barometer Program calls for sustained action from all stakeholders to (1) improve access to appropriate diabetes care and education, which includes appropriate access to medications, treatments, specialty care, and preventative measures and (2) enhance integration and coordination of care to improve patient-centredness of diabetes care and its related complications.

Earlier this month, the 22nd annual meeting of the European Society of Retinal Specialists (Euretina) was held in Hamburg Germany, bringing together colleagues face-to-face for the first time in two years. The congress attracts thousands of delegates from around the world to share scientific expertise and the newest evidence and opportunities in the retinal specialty.

The DR Barometer had the unique and unprecedented opportunity to share the Program with congress participants and advance our work through dialogue with leaders in the field. The Retinal Communities Pavilion, staged in the Exhibition Hall of the congress, showcased the work of the DR Barometer and partners including the International Federation on Ageing (IFA), the International Agency for the Prevention of Blindness (IAPB), the Vision Academy, and sister program, the nAMD Barometer. Amid the Exhibition Hall, amongst a sea of booths showcasing products and medical technologies, the Retinal Communities Pavilion offered something different, instead bringing attention to the work of these Programs and patient voices to the forefront.

As the Secretariat for the DR Barometer, I had the fortunate opportunity to attend the congress, in addition to representing the International Federation on Ageing. Every morning I weaved through the booths, coffee in tow, and a renewed energy to shake hands, make introductions, and share the DR Barometer, pointing to pages of work, images on the Pavilion walls and passing around leaflets that described the Program.

The Pavilion quickly became a space to interact with colleagues new and old, a global platform and point of connection to improve patient-centered care and understand the real-world experiences of patients with diabetic retinopathy and their providers, a physical incarnation of the mission of the DR Barometer.

Representatives at the Pavilion created a positive and welcoming environment to learn from each other, and visitors echoed the importance of this work, leaving a renewed sense of purpose and connection to its overall aims – understanding patient and provider experiences, improving patient outcomes, and addressing barriers to care.

Making the Connection Globally

In addition to hosting the Retinal Communities Pavilion, the Euretina Congress provided the opportunity to meet with colleagues from around the world involved in the DR Barometer Program as ambassadors in their countries.

Ambassadors shared their experiences with their patients and in their clinics responding to countless questions (“how many patients do you see with diabetes? how do they get to your clinic? how do you persuade them to start treatment and continue treatment?”). They shared their real experiences with patients, their values, and the ways they try to improve care.

Many retinal specialists spoke about the multi-factorial aspect of the disease, meaning it’s not enough to just focus on the eye. There is a need to see beyond the eye and create an environment where patients receive coordinated care to manage their diabetes and adequate education on the vision-related complications of their diabetes.

Their accounts of treating patients highlight the challenges and potential solutions to improving care for those with DR and DME, some country-specific but some universal. These experiences bring purpose to the work of the DR Barometer and inform the initiatives that will address barriers to care and seek to improve policy and practice. The DR Barometer is built on conversations and connections like these, which will drive continued momentum to progress the work of the DR Barometer, always with the mission of improving patient care in the real world.

Follow for more updates on this work, new evidence, and opportunities to join the #DRBarometer community. 

Many of us are aware of diabetes. You may know someone born with it or know that it can develop later in life. You may even know that managing diabetes requires lifestyle modifications, such as monitoring your glucose levels, dietary changes, and regular doctor’s appointments. But did you know that many individuals with diabetes are at-risk of vision impairment due to their diabetes?

Diabetic retinopathy (DR) arises from high blood glucose levels which damage the blood vessels in the retina, or more simply the back of the eye important for signaling to the brain and subsequent visual recognition. Diabetic retinopathy, and a related eye complication called diabetic macular edema (DME), both result in vision impairment, and even blindness. These conditions make it difficult to perform daily tasks, such as working, reading, and driving. 

Diabetes is truly a chronic disease, meaning that it requires lifelong care and a continuous journey through the healthcare system as a patient. The number of people with diabetes is increasing. According to the International Diabetes Federation, the global diabetes prevalence in 2021 was estimated at 536.6 million people, approximately 10.5% of the global population, rising to 12% by 2045. The increasing prevalence of diabetes means that the number of people at-risk of diabetes-related vision complications will increase. Diabetic retinopathy affects over one-third of people with diabetes.  There is a need for better access to treatment or, even more pressing, improved education and screening (including eye exams and taking images of the eye) to prevent the development of eye diseases or detect them early to prevent debilitating vision loss. 

Many factors affect a person’s ability to manage their diabetes and related eye diseases and receive adequate care. To improve understanding of the complex issues which contribute to the increased prevalence of DR and DME and the actual experiences of patients and their care providers, a groundbreaking global study was conducted in 2016. In over 41 countries, over 7,000 respondents highlighted the real-life experiences of people living with diabetes-related eye complications and their healthcare providers. 

In response to the findings of this study, along with partners, Bayer, the International Agency for the Prevention of Blindness (IAPB), the International Diabetes Federation (IDF), and the Vision Academy, IFA established the DR Barometer Program, conceived as a global platform for not only ophthalmologists but also nurse educators, general practitioners, patient organizations, and advocates.  Over the last 5 years, the DR Barometer Program has served as a point of connection to improve policy and practice which enables patients to prevent vision loss related to their diabetes and receive vision-preserving treatment.  

Now, a renewed vision will guide the future of the DR Barometer Program and address the current barriers which prevent patients from accessing care that improves their vision, and, most importantly, quality of life.  A recent meeting, hosted in Singapore, gathered thought leaders of the DR Barometer Program, including experts in ophthalmology, advocacy, and industry, with the following goals:

• To assess new evidence of patient and provider experiences and barriers to improve adherence and compliance in the management and treatment of eye conditions 
• Establish new ways of working and upcoming projects to ensure patient-centered care and address barriers to care for those with DR and DME

With a renewed focus, cemented in consultation with leaders of the Program, the DR Barometer will focus on understanding barriers and influencing policy to ensure access to care that preserves vision, function, and quality of life. 

Mapping the patient journey

Reaching an ophthalmologist is complicated, more of a winding path than straight, and information is not readily accessible.  The DR Barometer Program aims to outline the path from an initial eye exam to ultimately receiving treatment.  This work will help to identify barriers that prevent people from reaching specialists for treatment and possible solutions in countries. 

Driving in-country action

Understanding and improving the patient journey to the eye care specialist is only one half of the puzzle to ensuring eye care that preserves vision and quality of life.  In complement, the DR Barometer Program aims to optimize care in ophthalmology clinics to respond to both patient and provider experiences.  Healthcare systems and policies are specific to countries, therefore it is important to develop solutions firstly at a country level, before drawing themes across countries. 

These pieces of work, along with new evidence of patient experiences living with diabetic eye diseases and provider and staff experiences working to deliver care, represent a renewed vision and commitment of the DR Barometer Program. The Program continues to mobilize a community of passionate leaders to advocate for policy and practice change which improves the health and well-being of patients.

Follow for more updates on this work, new evidence, and opportunities to join the #DRBarometer community. 

The DR Barometer program, with support from Bayer, will host a webinar titled “Diabetes and Vision Health: The New Landscape” to launch the critical conversation on the need to harness the latest advancements in technology to deliver integrated people-centred eye care (IPEC).

Creating an environment that enables older people to do what they have reason to value is central to the UN Decade of Healthy Ageing and within that the delivery of integrated care and primary health services responsive to their needs.  An integrated system that is built on coordinated care holds the promise on not only saving lives but also saving sight.

Of all the diabetic microvascular complications, diabetic retinopathy, in particular, remains one of the leading causes of preventable blindness.  Annual screening is the most cost-effective method of prevention and detection.  The success of a national screening programmes has been well-documented, as in the case of England, where diabetic retinopathy is no longer the leading cause of certifiable blindness in the working age group[i].  However, implementation of screening within global healthcare systems has been slow or uneven. 

Integrated people-centred eye care (IPCEC) is one of the principal recommendations of the World Report on Vision.  Access to quality eye care is integral to universal health coverage, which in turn is integral to delivering Sustainable Development Goal 3 – “Ensure healthy lives and promote well-being for all at all ages.”

Delivering integrated people-centred eye care requires a strategic cross-sectoral, interdisciplinary approach that employs technological advancements such as teleophthalmology, artificial intelligence, mobile health[ii].  These technologies have been used to provide screening and referral services and have the potential to reach underserved and unserved populations globally.  Integrating the use of teleophthalmology could lead to efficient health systems that not only improve patient outcomes but also foster healthy ageing.

This Panel will provide the impetus for dialogue and a call to action to change the pace of integrated eye care through:

1. Increased understanding on emerging technology in ophthalmology
2. Launching an international conversation on integrating eye care into health systems
3. Bringing together a worldwide community of vision health advocates and leading experts in the field

   Key Messages:

4. The uptake of screening services is slow to stagnant and the necessity for universal health coverage must be emphasized.
5. The pandemic has shown that there is a pressing need for stakeholders to discover and implement the use of telemedicine in ophthalmology in order to improve vision health outcomes.

   Panelists:

   1. Mr. Peter Holland, CEO of the International Agency for the Prevention of Blindness (IAPB)
   2. Dr. Sehnaz Karadeniz, Professor of Ophthalmology at Istanbul Bilim University, Ophthalmologist at Florence Nightingale Hospital, Turkey
   3. Dr. Majda Hadziahmetovic, Assistant Professor of Ophthalmology, Duke University, USA

      Register for the webinar here.

      _____________________________________________

      [i] Scanlon, P.H. The English National Screening Programme for diabetic retinopathy 2003–2016. Acta Diabetol 54, 515–525 (2017). https://doi.org/10.1007/s00592-017-0974-1

       

      [ii] Sreelatha, O. K., & Ramesh, S. V. (2016). Teleophthalmology: improving patient outcomes?. Clinical ophthalmology (Auckland, N.Z.), 10, 285–295. https://doi.org/10.2147/OPTH.S80487

The DR Barometer program, with support from Bayer, in their endeavour to increase patient awareness, facilitate knowledge exchange, and engage stakeholders hosted a session on neovascular age-related macular degeneration (nAMD) and its connection to mental health.

Rapid population ageing, the almost epidemic rise in neovascular age-related macular degeneration (nAMD), and the continued lack of government investment in health promotion and prevention strategies has the potential to result in unprecedented psychological toll on patients and their families. 

The central purpose of nAMD management is to minimize vision loss and related physical effects.  Yet increasingly retinal specialists are recognizing the mental health consequences impairment and vision-loss on the quality of life of their patients.  Deterioration in a person’s functional ability often leads to increased risk for clinical depression and anxiety.

A study conducted in 2020 found a high prevalence of depressive symptoms among nAMD patients presenting for treatment with poorer self-rated health, impaired activities of daily living, and reduced visual function.[i]  While most patients with nAMD have achieved positive outcomes from anti-VEGF treatment, approximately 10% of patients whose outcomes are not ideal are at risk for depression.[ii]  This reveals a necessity for psychiatric and rehabilitative interventions for some nAMD patients who are receiving treatment.

The evidence is overwhelming that nAMD is a critical public health issue and remains a significant threat to mental health.

 The future of nAMD management lies in a well-developed model that is patient-centred and harnesses the latest research in the field – improving the language used by healthcare professionals, testing the most effective examples of practice with feasibility studies at a country level, screening for psychological symptoms in routine eye care, ensuring referrals, and continuing to monitor mental status.[iii] 

On November 12, 2021, at the IFA 15^th Global Conference on Ageing, the panel of eminent speakers helped drive policy and practice dialogue from evidence to practice through three main goals:

1. Increase understanding on the multifaceted impact of retinal diseases and mental health
2. Create a conversation on incorporating mental health care into the management of eye diseases.
3. Contribute to the discourse on the nature of education for health care providers to equip them with the patient communication tools that alleviate concerns, deliver quality care, and strengthen patient satisfaction as part of comprehensive care.

   Key messages of the session included:

   1. Mental health screening at the time of the diagnosis, regular screening and appropriate referrals for psychological symptoms, and therapeutic interventions need to be incorporated into primary care.
   2. Current care practices must be redesigned to position the patient as the leader of their health care team.
   3. Rates of depression and anxiety in nAMD are high even among patients who received anti-VEGF treatment.
   4. Mental health and nAMD are inextricably linked.

      Panelists:

      Prof. Tariq Aslam, Consultant Ophthalmologist, Manchester Royal Eye Hospital; Vision Academy

      Prof. Alan Cruess, Professor of Ophthalmology, Dalhousie University

      Dr. Kiran Rabheru, Geriatric Psychiatrist, The Ottawa Hospital

      A recording of the session is available here.

      ______________________________________________

      [i] Vu, K.V., Mitchell, P., Dharamdasani Detaram, H., Burlutsky, G., Liew, G. and Gopinath, B. (2021), Prevalence and risk factors for depressive symptoms in patients with neovascular age-related macular degeneration who present for anti-VEGF therapy. Acta Ophthalmol. https://doi.org/10.1111/aos.14635

       

      [ii] Casten R, Rovner BW, Leiby BE, Tasman W. Depression Despite Anti–Vascular Endothelial Growth Factor Treatment of Age-Related Macular Degeneration. Arch Ophthalmol.2010;128(4):506–508. doi:10.1001/archophthalmol.2010.24

       

      [iii] Rovner BW, Casten RJ, Hegel MT, Leiby BE, Tasman WS. Preventing Depression in Age-Related Macular Degeneration. Arch Gen Psychiatry. 2007;64(8):886–892. doi:10.1001/archpsyc.64.8.886

The majority of vision loss is in older persons (50 years of age and over).[i]  Diabetic eye disease, a group of vision complications which includes diabetic retinopathy, diabetic macular edema, cataracts, and glaucoma, can lead to vision impairment and loss.  Diabetic retinopathy, in particular, is the most frequent cause of new cases of blindness among adults aged 20–74 years.[ii]

Vision is a key component of functional ability, and many cases of vision loss and impairment can be mitigated and prevented through timely access to screening, treatment, and rehabilitation.

According to the DR Barometer study, barriers to eye screening have been found to be a critical policy issue.  Barriers related to health systems are contributing factors such as limited access to patient education on diabetic retinopathy and diabetic macular edema, complicated referral processes, inadequately equipped clinics, cost of care, and the lack of awareness on the part of healthcare providers on the importance of physician-patient communication.

On World Sight Day 2021, the DR Barometer program encourages taking scientific evidence to policy and practice action around diabetes-related vision complications, to address gaps in patient care and patient education, guidelines and protocols, and coordinated care in order to result in positive outcomes for adults with diabetes.

The International Agency for the Prevention of Blindness’ (IAPB) World Sight Day campaign for this year focuses on the theme #LoveYourEyes. The International Federation on Ageing (IFA) is pleased to support the campaign and recommends addressing the significance of eye health at the country and global level.

• • Access the Education Pack to help teachers and children talk about eye health.
  • Learn the 4P’s of good eye health through this guide.
  • Make a Pledge to have a sight test or care for your eyes to show your commitment to the global eye health agenda.

The pandemic has shown that older persons are disproportionally affected by the virus, especially those with chronic conditions such as diabetes.  With eye care services put on hold, those with preventable vision conditions are at high risk of vision impairment and/or loss.  It is now time to raise awareness of eye health for those around the world who do not have access to vision care and close the gap.

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[i] International Agency for the Prevention of Blindness. (2021, April 13). Inequality in Vision Loss: Age. Retrieved June 10, 2021, from https://www.iapb.org/learn/vision-atlas/inequality-in-vision-loss/age/

[ii] Fong, D. S., Aiello, L., Gardner, T. W., King, G. L., Blankenship, G., Cavallerano, J. D., . . . Klein, R. (2003). Diabetic retinopathy. Diabetes Care, 26(Supplement 1). doi:10.2337/diacare.26.2007.s99

May is Vision Health Month, and the IFA is committed to advancing the rights of older people by influencing policy towards making integrated people-centred eye care (IPCEC) a reality, which is integral to universal health coverage.

The IFA’s Vision Health Portfolio, which consists of the DR Barometer and the EyeSeeYou programs, focuses on addressing gaps and exploring the latest trends in treatment and outcomes related to diabetes-related vision complications and age-related macular degeneration.

The Portfolio’s Statement is now available here.

Following the findings of the ground-breaking DR Barometer study, the DR Barometer program was born. Gaps were found in patient awareness and education, coordinated care, and treatment guidelines and protocols of diabetes-related vision complications.

Diabetes is a complex, multi-faceted disease that requires behavioural modification and support. Integrating care that positions the patient as the leader aligns with the recommendations and goals listed in both the UN Decade of Healthy Ageing as well as the World Report on Vision.

To combat the global epidemic of diabetes, it is necessary to understand  the national status of prevention, treatment, and control in various countries. Sharing of best practices is key to optimising care.

In February 2021, the program launched the Country Spotlight Series to showcase the dedication and innovation of professionals working in the field and learn from experts at a country level in order to provide country-specific guidance.

Comprehensive numbers on diabetes prevalence, mortality, and risk factors whilst available, do not show the human aspect of care. The Series shines much-needed light on healthcare providers working tirelessly behind the scenes, the patients who live with diabetes every day, and the round-the-clock support provided by peer networks.

The Country Spotlight Series aims to bring together key stakeholders, and learn from best practices, and identify opportunities to improve care and thereby influence policy.

The first Country Spotlight features Turkey with Dr. Sehnaz Karadeniz, former Chair of the International Diabetes Federation European Region, Professor of Ophthalmology at Istanbul Bilim University, and ophthalmologist at Florence Nightingale Hospital.

“Diabetic retinopathy is one of the most feared complications of diabetes,” Dr. Karadeniz said. “This outbreak has shown us that we are not prepared for these emergencies. Especially during times of outbreaks, there should be hotlines where patients can acquire help 24 hours a day.”

Knowledge sharing and storytelling around disease management in an open discourse leads to positive changes in personal and community practices as well as in policy, thereby demonopolizing knowledge for the benefit of those who truly need it.

Videos of the series’ interviews are available here. 

The DR Barometer program is making great strides in community development and knowledge facilitation in order to influence policy.  The program was established to address the gaps in patient awareness and education of diabetic eye diseases, as well as the barriers to screening and treatment services at a country level. 

Following the format of the weekly International Federation on Ageing (IFA) Virtual Town Halls, which have proved to be a successful point of connection of friends, colleagues, and experts working in the field, and on behalf of millions of vulnerable people, the DR Barometer program has commenced monthly townhalls in 2021. 

In a news release published in December 2020, the World Health Organization (WHO) revealed that diabetes has now entered the top 10 causes of death and disability worldwide.

The WHO further states that the global prevalence of diabetes has nearly doubled since 1980, rising from 108 million in 1980 to 422 million in 2014. Between 2000 and 2016, there was a 5% increase in premature mortality from diabetes. As one of the most widespread global non-communicable diseases (NCDs) in high and lower-middle-income countries, the devastating effect of diabetes cannot be ignored.  It is a critical public health problem, and one of four priority NCDs targeted for action by world leaders.  For those living with diabetes, it remains a multifaceted condition requiring understanding, self-management, lifestyle changes, routine medical care, and psychosocial support. 

The purpose of the Diabetes Alert! Series is to bring together experts in the fields of diabetes and vision health to identify opportunities to overcome challenges through collaborative and cross-sectoral partnerships.

The first Diabetes Alert! Series Town Hall was conducted on 25 March 2021, featuring Dr. David Chaney. Dr. Chaney is the Assistant Director for Local Impact at Diabetes UK and was previously the National Director for Diabetes UK Northern Ireland. As an expert on delivering diabetes education projects around the world, Dr. Chaney’s keen insights into the condition and its management were welcome within not just the DR Barometer community but also the wider audience. A recording of the town hall and associated resources are available here.

Join us every month at the town halls to listen, learn, and connect with key experts in the field.

World Diabetes Day on the 14 November is a time to bring awareness to the condition and its complications while also highlighting latest medical advancements and good practices. 

Diabetes is known to be a major cause of disability and illness around the world, with devastating social and economic consequences for the individuals as well as society. Diabetic retinopathy (DR) – a complication of diabetes caused by damage to blood vessels in retina – can lead to vision loss and blindness. The good news is that over 50% of type 2 diabetes is preventable with early detection of the risk and lifestyle improvements. 

Presented at the European Association for the Study of Diabetes (EASD) in Spain this year was a study that demonstrated the power of science and humanity. Researchers from the Medical School at the University of Exeter used a newly developed biomicroscope to measure the autofluorescence in eyes which reflects the level of advanced glycation end-products (AGEs). High levels of AGEs, detected among people with type 2 diabetes and prediabetes, can contribute to several diseases, including visual complications of diabetes such as retinopathy.  

Being able to predict a person’s risk of developing diabetes also provides an opportunity to intervene and prevent long-term consequences. “Lens autofluorescence could be a robust marker of long-term diabetes control predicting future complication risks,” said Dr Mitra Tavakoli, lead author of the study.

Blindness due to diabetic retinopathy has serious and life altering consequences to a person’s role and responsibilities as well as identity in family and society. Although early screening and management has been shown to avoid major damage occurs in eyes, individuals diagnosed with diabetes often do not have regular and routine eye exams.  

Education, awareness and self management are several key principles for those with diabetes and the associated vision complications. The IFA together with IDF, IAPB and the Vision Academy are working to shape and influence policy to improve the vision health of people with diabetes through the DR Barometer Community. The Community is a collaborative network that brings together health care professionals, patient advocates, individuals living with diabetes and experts from around the world. Join the DR Barometer Community today.