Bringing Sight to Armenia’s Future — the Children. Blindness is devastating at any age. But a child without sight, whether by birth or by accident, is especially tragic with their entire future at risk. Children who are partially or totally blind are unable to participate in the world around them, affecting their social growth, learning and everything related to growing up.
Eyes and vision rank among the most important health issues in children. Good eyesight is critical if Armenian children are to grow up with the advantages they need to be healthy, happy, productive adults. Eighty percent of what a child learns depends on her visual system with vision problems often leading to learning and behavior problems — 50 percent of children with learning difficulties have vision disorders. Yet, most children in Armenia begin school without an eye exam. If corrected early, more than 80 percent of eye problems are treatable leading to improved learning and better grades — early treatment prevents vision loss.
Vision screening — aimed at detecting eye disorders in children early—is the strongest method available for ensuring the long-term health and well-being of children. While serious eye disease is uncommon, it is estimated that one in 20 preschool children and one in four school-age children has a vision problem that could cause vision loss if left untreated. Working in the schools the Project provides new eyeglasses, examinations, surgical and medical treatments and education programs.
The Center of Excellence
In partnership with USAID the Project’s ROP program was developed in 2010 and the Center of Excellence was established in 2012. Dedicated to advancing eye care for infants and children in Armenia and eliminating preventable blindness caused by Retinopathy of Prematurity (ROP) and other childhood eye diseases, the Center has made an enormous impact on infant and childhood eye disease in Armenia in just six years. Eye care services have been elevated and are accessible. As well, ophthalmologists have received specialized training from U.S. ophthalmologists to perform a surgical procedure that had not been available in Armenia or throughout the region.
What is Retinopathy of Prematurity (ROP)?
ROP is a preventable cause of blindness and can be eliminated — the goal of the Center of Excellence. A devastating disease, it typically affects babies born less than 30 weeks of gestation and can lead to the accumulation of scar tissue in the eye resulting in severe retinal detachment and blindness. In the US, approximately 60% of babies in a neonatal intensive care unit (NICU) will develop some degree of ROP and 10% will progress to the advanced form. Untreated, half of the babies with the advanced form will go on to develop irreversible blindness—a process that can occur in one to two weeks. The treatment for ROP is a non-invasive laser therapy performed at the baby’s bedside in as little as 30 minutes. One treatment will usually produce complete regression of ROP if performed in a timely fashion. The overall success rate is 90%, although in the most aggressive form of ROP, the success rate falls to 50% to 70%. In those cases surgery may be necessary.
Background of ROP
An unforgiving disease, ROP has a rapid course with a high fail rate when mismanaged. As a result few ophthalmologists have a strong interest in caring for these very sick babies. This is becoming a serious problem in developing countries such as Armenia where historically these babies have not survived long enough to develop ROP. With the health care infrastructure advances doctors in these countries are now beginning to see this disease that the US first encountered in the early 1950s when an epidemic of ROP left an estimated 7,000 children blind in one year — Stevie Wonder was one of those infants. Prior to the EyeCare Project intervention none of the children in Armenia were receiving any treatment for ROP.
Blindness has a devastating impact on a person’s life. Infants who become blind adults face a lifetime of special needs. ROP is preventable — not to provide care when it is available would be tragic. In Armenia, the cost of a baby blinded at birth over her lifetime can be estimated in US dollars at between $1.1 and $7.2 million depending on the estimated rate of GDP rise (4% vs. 8%). The screening cost for an infant at risk is $35; the cost of treatment, $300. These provide compelling humanitarian and economic arguments for funding ROP care in Armenia.
Brief Description of the Problem
All over the world the number of surviving babies born prematurely with low birth weight is rising due to advances in neonatal care. These newborns, however, have many health risks in their lives including Retinopathy of Prematurity (ROP). ROP is a condition in which abnormal retinal neovascularization occurs at the intersection of mature and premature retina leading to changes in the retina including macular traction and retinal detachment which result in childhood blindness. (R. Ohanesian and M. Shahsuvaryan, Essentials of Ophthalmology, Yerevan 2007).
Screening and Treatment Process
ROP screening is conducted four weeks after birth. If ROP is detected the infant may have a laser procedure which prevents blindness in most cases. For a small percentage surgery may be required. With the program’s introduction of a new, advanced surgery a full complement of ROP quality services for in-country patients as well as patients from neighboring countries is available making it possible to treat all cases of ROP and prevent a lifetime of blindness.
The Project continues regular screening of premature infants in the neonatal intensive care units in Yerevan and has expanded this service throughout the regions of Armenia. By implementing the screening program in the NICUs of Gyumri, Lori and Kapan the entire country of Armenia is being covered.
Beneficiaries of Program
The initial target population served by our Initiative was comprised of all premature infants in Armenia — less than 30 weeks gestation or birth weight less than 2,500 grams — in NICUs throughout Armenia. With the launching of the second phase of our Initiative in 2012, “the Center of Excellence for the Elimination of Childhood Blindness,” we are now working with neighboring countries throughout the region.
Additionally, we are educating the Armenian pediatric ophthalmologists, neonatologists, obstetricians and general ophthalmologists about ROP — its frequencies, risk factors and the consequences if left untreated. Additionally, we are providing prenatal counseling for parents to reduce the number of babies with risk factors comparable to the US.
Education and Training
Education and training for physicians and ancillary medical personnel in Armenia is the cornerstone of the Infant Blindness Initiative. The program is based on successfully training Armenian ophthalmologists to diagnose and manage a disease they are unfamiliar with and have rarely seen or understood before. A telecommunications center will allow Armenian physicians to participate in fellowship-level training provided by one of the finest academic centers in America.
Sustainability is based on three primary factors. First, teaching Armenian physicians to diagnose and manage babies with ROP independently. Second, to provide Armenia with the equipment required to manage ROP including Ret-Cams and lasers. Third, to ensure sustainability we submitted a formal proposal to the Armenian parliament for long-term funding of ROP care. The parliament and the Ministry of Health have committed to paying for the screening costs and the salaries of personnel involved in ROP Care after the program becomes mature.
The Project is results oriented — a program that works. We maintain statistics on 17 indicators including (1) number of premature babies in NICUs; (2) number of babies screened; (3) number of babies requiring treatment and type of treatment; (4) outcome for all treated babies; and (5) number of babies blinded by ROP to determine change in prevalence of babies blinded by ROP.
Our ability to quantitatively measure the clinical acumen of our trainees in ROP diagnosis and management is a central feature of our educational strategy. All of the ophthalmologists we train take an online examination that assesses their ability to diagnose and manage ROP prior to the start of their training. After the training program is complete, the trainee retakes the examination, allowing us to compare the pre- and post-training scores and correct low-score areas among participants.
A Program That Works
The Project’s comprehensive and integrated program is significantly reducing the incidence of childhood blindness from ROP — as well as blindness from other preventable causes of childhood blindness. It has also increased the utilization of children’s eye care services by in-country and foreign patients and has increased the opportunities for collaboration and the sharing of knowledge and skills regarding childhood eye disease prevention and early diagnosis and treatment with Armenia playing a significant role in this process.