The National Center on Low Vision at the World Ophthalmology Congress

Congresso Mondiale Oftalmologia

Spotlight on vision rehabilitation during the Live program. Italy sets the international standards on rehabilitation but doesn’t provide the same level of service everywhere in its national territory. “Training, multidisciplinarity, and telerehabilitation are at the heart of both our research activities and our collaboration with the WHO”, says Dr. Filippo Amore, director of the center.

The biennial edition of the World Ophthalmology Congress was held between 26 and 29 June 2020 and it was the first to be organized online as a virtual experience.

The National Center on Low Vision gave two presentations at the Congress: the first focused on the curricula for vision rehabilitation operators; the second revolved around the state of vision rehabilitation in Italy.

“Those two areas are connected,” explains Dr. Filippo Amore, director of the National Center and guest speaker at the Congress. “Through the National Center on Low Vision – which has recently been confirmed as a WHO Collaborating Center for the third triennium in a row – Italy has set the international prerequisites in the field of vision rehabilitation and for the curricula which are recognized by the WHO as the gold standard for the training of vision rehabilitation operators. At the same time, our country lacks the necessary professional skills – in terms of the number of operators and training courses – and resources that would make rehabilitation available to visually impaired people who could really benefit from it, and that’s at least one million people”.

“The international effort of the Center also stems from a desire to help our country. Through scientific research, technological innovation, and training, we wish to extend the best practices in vision rehabilitation both to other low vision centers in Italy and to the national health systems of foreign countries, in the latter case thanks to our collaboration with the WHO”.

“We are currently working on the adoption of remote rehabilitation techniques, to cater to the needs of people who cannot access rehabilitation services near home. We contributed to the development of a software called Eye Fitness, which provides a home-based training platform that can be remotely controlled by our operators”.

These same topics were also discussed during one of the main sessions of the Congress Live program, in front of a virtual audience of 130 experts from all over the world.

“Participating in one of the leading international events in the field of ophthalmology is a great recognition of our work and our multidisciplinary approach, which brings together psychological and ophthalmological assistance, training of the residual vision and also in the use of optical, digital and electronic aids. For us, this was also an opportunity to stress that vision rehabilitation is and should be considered an integral part of eye care. When nothing else can be achieved through surgery or medicines, there’s still a lot that visually impaired people can do to safeguard and regain their personal autonomy. This has been our message since the foundation of the National Center in 2007, and it’s a message that is gathering increasing scientific evidence and international support”.

Collaboration with the WHO reconfirmed

World Health Organization

The WHO has reconfirmed the National Center on Low Vision as a reference point in the field of vision rehabilitation for the third triennium in a row.

From May 2020 until May 2023, the National Center on Low Vision and Vision Rehabilitation at the Gemelli hospital in Rome will work alongside the WHO with two different objectives: setting the standard parameters to assess the quality of eye care in countries around the world and conducting a study on the benefits of vision rehabilitation on elderly patients affected by cognitive decline.

“These are two fairly unexplored areas and the National Center, as a WHO Collaborating Center, will pave the way forward”, explained director, Dr. Filippo Amore. “In regard to the assessment parameters, we will provide the WHO with a new tool: a set of guidelines, which the WHO will pass on to its member states so as to assess the state of eye care services around the world more coherently”. The second aspect deals with the possible benefits of vision rehabilitation in elderly patients with cognitive decline. Even though the relationship between sensory deficit (vision/hearing impairments) and cognitive impairment is well documented, there is no evidence of the benefits that sensory rehabilitation can bring in terms of reducing, halting, or inverting the progression of the degeneration. “This is an important aspect,” Dr. Amore explained, “which needs to be demonstrated in order to state that, as we strongly believe, rehabilitation is an integral part of eye care and deserves to be enhanced in different courses of treatment”.

It is not the first time that the National Center, headquartered at the Gemelli Polyclinic hospital in Rome, has collaborated with the WHO. In fact, this is the third 3-year based collaboration period that has just started, and the WHO has entrusted the National Center with a leading role.

“This is an important achievement,” Dr. Amore said, “a confirmation of the quality of the work we have done so far in setting, among other tasks received by the WHO, the international standards in vision rehabilitation and the training path that must be undertaken by health professionals who will deliver vision rehabilitation services”.

“However, such recognition is not a finishing line, but rather an incentive,” added the director. “The National Center on Low Vision has a leading role in the field of vision rehabilitation, both in Italy and around the world, and this is a role that comes with specific responsibilities. The first is continuing research by combining the delivery of vision rehabilitation services and studies aimed at their improvement, while preparing patients to be taken on by other specialized centers in Italy. The second task is to draw the attention of the general public and the decision-makers to the importance of rehabilitation itself, and on the limited means we currently have at our disposal in Italy”.

“The National Center is a rare pocket of excellence, since it combines the multidisciplinary competences of psychologists, ophthalmologists, orthoptics, etc. In this way, we can help our patients accept the consequences of vision impairment and regain their personal autonomy, even when surgery and medicines cannot grant any further improvement. The message we want to send out is this: rehabilitation is an integral part of care, together with prevention and treatment. It is a fundamental resource for patients who have lost a considerable portion of their sight, even when their vision impairment is irreversible. Therefore, it is important to develop a network of rehabilitation centers all over our national territory, with specialized and multidisciplinary staff. With the National Center, Italy has set the gold standard in this field internationally, however, our country needs trained personnel and consistent investment in order to make rehabilitation available throughout our national territory”.

How to overcome the COVID aftermath: video contents by the National Center on Low Vision

Filippo Amore

The long period of mandatory social distancing will be particularly hard on people affected by vision impairment. This is why the operators at the National Center on Low Vision and Vision Rehabilitation – the only WHO collaborating center for vision rehabilitation – have launched a video initiative to remain close to their patients. “We wish to be useful, even if from a distance,” stated Dr. Filippo Amore, ophthalmologist and director of the National Center, which was inaugurated ten years ago at the Gemelli hospital in Rome by the Italian branch of the International Agency for the Prevention of Blindness-IAPB Italy. “We want to allow our patients to refresh their rehabilitation training program and show what a great opportunity this is to reclaim one’s autonomy, and also for people who have never heard about this possibility”.

“The main reason is that undertaking a vision rehabilitation program has helped our patients be better prepared for the challenges of the COVID-19 pandemic. Both psychological counseling and knowing how to use the many optical and digital aids available today were points of strength that helped fight back against loneliness, sadness, and social isolation”.

“Anybody who is familiar with vision impairment knows that there is no magic formula because lost vision cannot be recovered. However, not enough people are aware that there’s an aspect in which we can still make a big difference: personal autonomy”.

“Many visually impaired people have started to live again thanks to rehabilitation. But many more could also learn how to benefit from it”.

“Together with our patients,” Dr. Amore concludes, “In these videos, we look for solutions to real problems of their everyday lives: how they can solve these issues by themselves or when it is necessary how to seek the help of others. With their contribution and that of the talented operators at the National Center on Low Vision, we will look for the best strategies that can make a difference in granting patients the freedom to engage in relationships, satisfy their needs, attend to their personal matters and look after themselves independently, thus building confidence and self-empowerment, and achieving a fulfilled sense of living, that visually impaired people are fully entitled to”.

Glaucoma: what you need to know

This article marks the beginning of a new partnership for the dissemination of news on eye health prevention between IAPB Italy and Pazienti.it.

The Italian medical news website Pazienti.it interviewed Prof. Gianluca Manni (ophthalmologist and Head of the Glaucoma Centre at the Polyclinic Hospital of the University of Rome Tor Vergata) on glaucoma and how to become aware of it.

This is the first in a series of articles that will stem from the new partnership between the International Agency for the Prevention of Blindness-IAPB Italy, and Pazienti.it. IAPB Italy will provide and assess medical scientific content while working side by side with Pazienti.it to improve the dissemination of news that help raise public awareness and promote health prevention.

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First data of the IAPB Italy’s campaign now available: 40 percent unaware of being at risk

The results of the first 555 recorded check-ups were presented at the Chamber of Deputies. IAPB Italy’s large mobile clinic has reached nine cities and checked 1,800 people in two months and will cover the whole of Italy between 2020 and 2021. The aim of this initiative is to promote a healthcare model centered on prevention and early diagnosis, which employs telemedicine, builds a national database and raises awareness among citizens and institutions on the risk of eye diseases that can cause low vision and blindness.

Today, Tuesday 17 December 2019, a conference was held to discuss the preliminary results of the retinal and optic nerve disease prevention campaign run by IAPB Italy.

The conference took place at the Press Office of the Chamber of Deputies and was attended by Mr. Giuseppe Castronovo, President of the International Agency for the Prevention of Blindness-IAPB Italy; Prof. Filippo Cruciani, scientific advisor to IAPB Italy; and Paolo Russo MP, ophthalmologist and President of the Interparliamentary Group for the Protection of Sight.

Funded by the 2019 Budget Law, the campaign delivered 1,800 free eye examinations in two months. The check-ups were performed inside a 100sqm mobile clinic that has reached nine Italian cities so far and which will travel across the whole of the country between 2020 and 2021.

The analysis of the first 555 medical reports carried out remotely by tele-diagnostics showed that 40% of the subjects were affected by a full-blown disease, presented early pathological symptoms or displayed warning signs that required further examination.

“These data derive from a random and unstructured sample – Mr. Castronovo and Prof. Cruciani explained. However they represent well the level of risk and the unquestionable importance of early diagnosis.”

Retinal and optic nerve diseases such as glaucoma, diabetic retinopathy and age-related macular degeneration are asymptomatic in the early stages. For this reason, only early diagnosis can prevent the onset of silent but irreparable damage to the eye nerve cells, on which our vision depends.

The aim of IAPB Italy’s initiative is not just to provide an opportunity for people to undergo an eye examination. Its true and ambitious objective is to promote a new diagnostic model for Italy’s regions, which is focused on prevention and early diagnosis. IAPB Italy intends to build such a model by raising awareness among citizens and institutions on the increased risk of blindness (due to aging) and capitalizing on the experience with tele-diagnostics during its campaign, in order to create a national database for retinal and optic nerve diseases.

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WHO assigns the National Center on low vision to develop vision rehabilitation curricula

World Health Organization

“Italy is leading an international effort to determine the standard for professional skills and abilities in the field of vision rehabilitation, which is an integral part of eye care”, says Dr. Filippo Amore, director of the National Center on low vision. The conclusive virtual meeting of leading international experts will take place on Wednesday, 4 March. Soon afterward, a number of Italian and international specialists will leave for Morocco to introduce vision rehabilitation services in the country and put into practice the work that has been developed over the past three years.

For the past six years, the National Center of Service and Research for the Prevention of Blindness has been working in collaboration with the WHO to define and develop the international standards for vision rehabilitation.

In particular, the objective of the WHO’s mandate since 2016 has been the development of a set of curricula aimed at professional figures working in the field of vision rehabilitation (i.e. ophthalmologists, psychologists, orthoptists, O&M instructors, pediatric neurologists, etc.).

Dr. Amore explained that “Our aim has been to identify the criteria and prerequisites for the training of a number of health professionals who are involved in the vision rehabilitation of adults and children.”

This aim will be achieved on 4 March, during a teleconference where some of the world’s leading experts on the subject will convene to approve the curricula that have been drafted by the National Center.

“Rehabilitation is an integral part of care,” Dr. Amore continues. “Even when a patient’s sight is almost completely lost to an acute or chronic disease, a rehabilitation program helps them face and overcome their grief, and partially recover their autonomy. The culture and practice of vision rehabilitation are still under development both in Italy and around the world, but are not well rooted yet. Thanks to the WHO’s mandate, we are paving the way in this field.”

The drafting and reviewing of the curricula have lasted three years. “We started from a close review of the existing literature and available data,” explained Dr. Simona Turco, project manager of the curricula initiative. “We then made a list of the essential and higher-level skills which are deemed indispensable for the delivery of vision rehabilitation services in each of the three settings/levels of care identified by the WHO: the primary level, or the first point of consultation; the secondary level, where outpatient treatment is provided by specialists; and the tertiary level, usually a highly specialized health center with a leading national role also for research programs.

The first draft of the curricula was extensively reviewed, with many international experts suggesting modifications and integrations. These changes were in turn analyzed by specialists, in a collaborative effort. The final curricula draft that resulted from this process will eventually be reviewed and approved during the 4 March teleconference.

On the path that has been traveled since 2013 – when the WHO’s first mandate assigned the National Center to develop the international standards for vision rehabilitation – a key factor has been the ability to adapt requirements, tools, and skills to the capacity of health systems in middle- and low-income countries.

The task received from the WHO was to develop a set of curricula for vision rehabilitation operators. “It was difficult to find the right balance, due to the obvious differences in available equipment, territorial organization and therapeutic priorities among various countries, but it was worth it,” Dr. Amore concludes. In March 2020, the National Center will launch a new project for the introduction of vision rehabilitation services in Morocco. This assignment is part of the WHO’s mandate and will be the first opportunity to implement vision rehabilitation standards and the newly approved curricula on the ground.

Promoting eyesight: starting soon after birth

Workshop

“How we learn to see” is the title of the workshop that Dr. Daniela Ricci, pediatric neurologist of the National Center on low vision and vision rehabilitation, and her team will hold in Rome on 14-15 February 2020. The event will be an opportunity to illustrate a whole sector of vision rehabilitation: low vision in childhood, its causes, and the chances of recovery offered by spontaneous or induced brain plasticity in the first months of life.

“Eyesight plays a pivotal role in child development from birth, both for motor and interpersonal skills”, Dr. Ricci explains. “Early diagnosis of any vision problem is therefore crucial for timely treatment so that a child may develop their full potential”. The National Center for Vision Rehabilitation, where Dr. Ricci works as a pediatric neurologist, treats approximately 800 visually impaired children every year.

Many of these children have a surprising recovery ability, even in the case of severe brain damage, because around the end of pregnancy, brain plasticity in newborns is higher. “This means,” Dr. Ricci clarifies “that when damage occurs during the neonatal period, the adjacent areas of the brain, which are still intact, perform the functions that are recognized as essential. This spontaneous plastic ability is at its peak in early infancy, although recent studies have shown that ‘induced’ plasticity during rehabilitation can improve vision performance at all ages”.

“Vision problems can stem from very different causes, some severe, others less so. However none of them should be ignored and the assessment of visual skills must be conducted from the first days of life, when risks may be present. In the case of eye diseases, vision problems may not be immediately evident, however, orthoptic and ophthalmological examinations can be performed from the first months of life. On the contrary, in some brain pathologies, vision problems may be the first sign to emerge, in the form of poor attention or poor ability to fixate or follow a toy. In both cases, a possible vision problem should be taken into consideration and its cause should be investigated. The earlier the diagnosis is made – and the earlier the intervention is performed – the greater the recovery of the child and the development of their potential”.

This is the scope of the workshop “HOW WE LEARN TO SEE – Early neuro-visual assessment and rehabilitation”, which will be held in Rome on 14-15 February 2020.

The event caters to different healthcare professional categories”, explains Dr. Ricci, who is the organizer. “The aim is to summarize the most important information on how to detect visual problems, which exams must be performed in the early stages and what kinds of intervention should be carried out to promote the development of a child’s visual and psychomotor skills”.

Dr. Ricci, what is the incidence of low vision in children, and what are the causes?

“Unfortunately, we don’t have reliable data regarding children in Italy. According to the ISTAT report “Health conditions and use of health services in Italy and the European Union”, one third of elderly people suffer from at least moderate visual limitations, which amounts to 4.5 million people. Two out of a hundred people aged 15 and over, suffer from severe visual limitations, a percentage that rises to 5.4 among the over 65, and to 8.6 among the over 75. There is no reliable data for subjects under the age of 15. However, we can say that since 70 percent of children with a motor problem, which is the consequence of brain lesions, can be affected by an associated vision deficit, at least two children out of 1000, who are born alive every year, are at a high risk of developing a visual impairment. Children with eye pathologies must be added to that figure”.

What does the rehabilitation path consist of?

“Play is always the basic underlying activity. Our core task is to help children use their sight and find it interesting, so that exercises and efforts, combined with the brain’s ability to replace damaged neurons with intact ones from adjacent areas, encourage the development of visual skills to their full potential. Since we have assessment protocols, that are standardized and easy to perform, which help us identify a vision issue from the neonatal period, we can start our observations also in the neonatal intensive care unit. The initial intervention, especially in the neonatal period, is often more centered on the parents. As soon as a diagnosis is made, parents can feel powerless and don’t know how they can help their little ones. Our task is to support parents in the early stages and help them understand that simple things – such as arranging indoor lighting, feeding, play and cuddling (by showing their faces in high-contrast, so that children may look at them) – help children become competent. In this way, we reinforce the child-parent relationship, which is always at risk in the presence of a sensory deficit, and help parents become more confident in their role as educators and more at ease with their children. Recovery possibilities at that age are very good, but interventions must be early and timely”.

Protecting the retina, saving sight

Preventing and dealing with age-related macular degeneration (AMD): a meeting devoted to the leading cause of blindness in industrialized countries

Organized by Novartis, the meeting aimed to take stock of the prevention and treatment of AMD. IAPB Italy, the Italian Society of Ophthalmology and the University of Rome Torvergata were present at the event.

Wet (or exudative) AMD – a chronic and degenerative disease that gradually damages the retina – is the main common cause of severe vision impairment and blindness in people aged over 65, affecting an estimated 20-25 million people all over the world. According to WHO’s estimates, this number is destined to grow, due to both the current state of patients and the increase in life expectancy.

Being affected by AMD can be a tragic and distressing experience, as recounted by a patient at the event. A professional painter, she experienced total central vision loss in the left eye early in 2000, when drug development had not yet reached today’s level. The outcome was different when, ten years later, after experiencing the same symptoms in the right eye – “a strong blow inside the eye” – she rushed to the hospital and received a timely treatment. After a few sessions, the eye was healed

The lesson to be learned from this experience is that what matters is not only the pharmacopoeia, but also individual behaviour. Being examined for an early diagnosis is up to patients. And being examined before the onset of any symptoms is crucial.  

“The importance of eye health is underestimated – said Mr. Tiziano Melchiorre, Secretary-General of IAPB Italy – and so are chronic and degenerative eye diseases, which lead to blindness, and their social burden, which includes reduced mobility and personal autonomy, an increased risk of accidents and the rise in the number of cases of depression. It is mandatory to keep people informed, speed up the diagnostic process and promote access to treatment, in order to prevent blindness and contain as much as possible the tragic consequences of visual impairment. Furthermore, it is important to increase awareness among patients and their families about the progression of diseases such as AMD, reminding them about the importance of following the prescribed treatments with consistency and promoting access to vision rehabilitation services.”

Dr. Marco Piovella, president of the Italian Society of Ophthalmology (SOI) has stressed that, “AMD has to be diagnosed as early as possible, since it is not curable. Timely therapeutic strategies include the monitoring of pathological fluid, so to prevent healthy photoreceptors from being damaged and contain vision loss. When treatments are successful, we speak of disease ‘control’ and patients need to be accurately informed about the risks of disease progression, also increasing their awareness about the importance of being consistent in following treatments over time. In Italy, 70% of the population is not treated or treated only partially, which nullifies therapeutic results. There are several reasons why this happens, some of them of a social nature – such as insufficient patient awareness of the disease – and others, which are more related to the structural and managerial limits of the national health system – such as excessive bureaucracy and limited finances.”

“It is important to treat not just symptoms, but also the underlying cause of the illness. In AMD, damage to the retina is due to retinal fluid leaking out of abnormal blood vessels in the back of the eye – said Prof. Federico Ricci, Director of the Chronic and Degenerative Eye Disease Department at the University of Rome Torvergata. In an ophthalmologist’s therapeutic arsenal, there are several classes and generations of drugs: some were synthesized more than ten years ago, others are molecules which have been recently developed. New drugs have a superior control ability over the retinal fluid than first generation drugs, and need to be injected less frequently to keep the retina dry. This is the case of Brolucizumab, a humanized single-chain antibody fragment of small dimensions, which is characterized by an excellent tissue penetration profile and high capacity to eliminate the liquid from the retina, thus keeping the retinal tissue in optimal operating condition. Brolucizumab is the only anti VEGF to have proven its efficacy in pivotal trials for eligible patients, with a three-month treatment interval immediately following the initial three monthly loading doses, in about 50% of cases. The drug was in fact recently approved by the FDA with this posology, called a fixed regimen, which also allows a precise planning of therapy over time “.