Treating retinopathy of prematurity (ROP) in neonates gives largely positive outcomes in the US and other Western countries where resources like ventilators are plentiful and healthcare professionals are trained in neonatal care. But in less affluent nations, where resources are scarce, health care infrastructure is limited, and clinicians are not trained in recognizing and treating ROP, it is not uncommon for a child with ROP to go undiagnosed, untreated, and eventually blind. It is a phenomenon that I witnessed when I was 12 time zones away in Yerevan, Armenia.
Back in 2010, in partnership with the Armenian Eye Care Project (AECP), I travelled to Yerevan, Armenia, where clinicians were not screening children for ROP, let alone treating it. Armenia saw a doubling of neonatal intensive care unit (NICU) beds in the country every 5 years since 1990, which built capacity to care for babies who were born prematurely. But screening for conditions associated with prematurity, like ROP, was not performed as a matter of course. As a result, there were many children who succumbed to ROP. In the absence of any screening and treatment for ROP, the rate of blindness would be extremely high. Fortunately, the success rate of laser treatment of ROP in the US is greater than 90%, with the vast majority of infants avoiding blindness.1
I had given a course through the American Academy of Ophthalmology on how to accurately diagnose ROP. I was asked by Roger V. Ohanesian MD, FACS, an American ophthalmologist of Armenian descent and one of the founders of the AECP to travel to Armenia to provide clinicians there with instruction on how to screen and treat ROP.Establishing an ROP Treatment Program
Although global health had not been a significant part of my career, their need was hard to ignore. I then travelled half way around the world to Armenia with colleagues, R.V. Paul Chan, MD, from the University of Illinois College of Medicine, and James Smith from the Sydney Medical School in Australia, to give a 3-day workshop on how to identify and manage ROP. We taught ophthalmologists and pediatricians in Armenia about ROP and how to diagnose it for the first 2 days of the workshop and then we showed how to treat it on the third day. On that third day, I was faced with the reality of the devastating impact that ROP could have on children in an area ill-equipped to respond to the condition.
We took the people who came to learn about the disease to a 15-bed NICU to show them how to examine the disease. By the time we saw these kids, 4 babies were in the most advanced stage of ROP and there was almost no time to act. It is important to keep in mind that the standard of care for aggressive ROP is to treat within 48 hours of diagnosis.
With only 2 ventilators in the hospital’s NICU in Yerevan, only 2 children at a time could be treated. It was an opportunity for the lead retinal surgeon in Yerevan, after being shown how to treat ROP, to treat an infant affected by ROP. One of the infants with bilateral ROP had one eye treated by that surgeon and the other eye treated by his medical student. For myself, it was a real example of see one, do one, and teach one. It is something that I had heard about but never experienced. By the time we had completed treating the 4 children, it was about 4 a.m. local time and my flight home was to leave 2 hours later.
Two weeks later, I returned with colleagues to Armenia to find 3 of the 4 children were recovering nicely. It was a significant moment, because it was the first time in the country’s history that children with ROP were prevented from going blind. Their parents were incredibly grateful. They were expecting that their children would become blind.
Sadly, a fourth child went on to become blind despite laser treatment. When the parents were told that the child would be blind in both eyes, they abandoned the child. That baby was put in an orphanage because we missed the window to treat ROP. If the workshop had been scheduled a week earlier, that child would probably not be blind and an orphan. It impressed upon everyone why managing the disease appropriately is important.
Before we returned to the US, we equipped the facility in Yerevan with 2 RetCam digital fundus cameras (Natus Medical Incorporated), thanks to the AECP, to enable the clinicians there to begin screening infants on their own for ROP.
Upon returning to the US, myself and peers such as Dr. Chan and Michael Chiang, MD, from Oregon Health and Science University in Portland, used store-and-forward telemedicine to review retinal images on the RetCam and provide guidance to clinicians in Yerevan about the diagnosis and treatment strategies for their infant patients.
A Google spreadsheet was developed and used to track if we, as clinicians in the US, reached agreement in diagnosis with clinicians in Yerevan. After 1 year of this ongoing communication, myself and colleagues travelled back to Yerevan to perform an audit of the cases and were impressed to find that the rate of blindness due to ROP had fallen substantially.
In fact, their success rates for diagnosis and treatment of the disease was equivalent to what was going on in the US through National Institutes of Health sponsored early treatment ROP trials. Clearly, the instruction had been very impactful.
More advanced cases of ROP, however, required surgery, such as a vitrectomy, that clinicians in Yerevan did not have the skill set to perform. These advanced cases were having to be referred to locations like St. Petersburg, Russia.
We had been asked by clinicians in Yerevan if we could train local surgical staff to manage these advanced ROP cases using telemedicine. I met the suggestion with skepticism, seeing difficulties like insufficient bandwidth and insufficient video compression to provide real-time guidance to surgeons in Yerevan.
But a simple solution came in the form of a “Slingbox” – a device that encodes local video for transmission over the internet. With bandwidth only improving in developing countries, I saw this as an opportunity to impart expertise to surgeons in Yerevan.
Bandwidth will only become better and better in these countries, especially when 5G LTE becomes available. I even found that I got better bandwidth in Armenia than I do in my own home.
To facilitate this real-time telemedicine project, the US State Department provided a $1 million grant to build a retinal surgical suite in the NICU in Yerevan.
The first step was to provide in-person training to Yerevan-based surgeons. Two retinal surgeons from Yerevan spent a month at CHLA to see how endoscopic pediatric retinal surgery is performed and to understand the mechanics of endoscopic surgery. After receiving this training, the surgeons left armed with the Slingbox.
With 2 screens in front of me, I saw the retina of the patient on one screen and, on another screen, I saw a larger view of the operating room and staff and communicate with them via Skype. This facility in Yerevan can service not only the local population but the population of Armenia at large and families who live in nearby former Soviet republics.
Other tele-educational initiatives have been spearheaded to improve the health of premature infants. After conducting a needs assessment, we determined that NICU nurses in Yerevan did not have formalized training for ICU care. To address this need, nursing staff at CHLA developed online modules in Armenian to provide education and instruction to the NICU nurses in Yerevan. Nurses were tested prior to exposure of the module content and after they have digested the module content. They receive certification with success on the posttest.
A Facebook-based training platform has also been created that has seen the growth of a virtual and interactive community of global retinal experts to comment on ROP cases in Yerevan. Leading experts from the US and London offer their input on a regular basis.
It is a great example of crowd-sourcing expertise, and the global engagement is an avenue to reducing disparities in patient care between resource-rich and infrastructure-rich Western nations and resource-poor and infrastructure-poor developing countries.
What started out as a retina-specific, ophthalmology initiative has grown in different ways to encompass child health in general. It is hard to imagine that this all started with a handful of ophthalmologists who were interested in helping children halfway around the world.Reference
- Hurley BR, McNamara JA, Fineman MS, et al. Laser treatment for retinopathy of prematurity: evolution in treatment technique over 15 years. Retina. 2006;26(7):S16-S17.