Seeing Retinoblastoma Through an MPH Lens
The first retinoblastoma patient I ever met had a tumor expanding out of the socket where his eye once was. He was about 5 years old, struggling, seizing in the emergency department at the Sotnikum Satellite Clinic just outside of Siem Reap, Cambodia. I had to ask what I was seeing. I was awed by his suffering and the hopelessness felt by his caregivers.
Retinoblastoma is a childhood cancer of the eye that is very treatable when diagnosed early. Despite knowing how to screen for it, advanced stages of the condition are so rare in the U.S. that I had never seen a patient with retinoblastoma during my training as a medical student.
As a visiting medical student in Siem Reap, Cambodia, in summer 2015, I was able to identify the problem as a clinician, and my training in public health at Mailman allowed me to successfully implement a screening training program in the Angkor Hospital for Children the following year. We were all very proud to report the percent of patients who were appropriately screened increased from less than 1 percent to 78 percent, and we were able to detect significant increases in physician knowledge about, support for, and comfort in performing the red reflex screen. We were also able to define several predictors of physician screening behavior change.
Here’s how it all came together.
In medical school, I had been trained to screen every young patient under my care with the quick and simple red reflex screen. It generally takes under 20 seconds and traditionally involves looking through a lighted instrument called an ophthalmoscope to check for a healthy red reflex—that red to yellow glow that sometimes shows up in photographs when a flash is used. Small children generally adapt rather than complain about vision impairment, so serious issues can be missed. Without screening for the root causes of vision impairment, eye problems like retinoblastoma often fester for weeks or months before diagnosis.
We essentially have universal screening in the U.S., and the five-year-survival for retinoblastoma is nearly 98 percent. The small percentage of kids who die in our country from this cancer has been attributed to a lack of access to care leading to delayed diagnosis.
At the Angkor Hospital for Children, I was struck by the stark contrast between the numerous cases of late-stage retinoblastoma being treated with chemotherapy and the absence of routine red reflex screening. With early detection, retinoblastoma can be treated with destruction by laser or total removal of the eye, potentially avoiding the need for chemotherapy. These modalities were available at the hospital. After discussing the situation with senior faculty, the head of the eye clinic, and the pediatric oncology specialist, we came up with the idea to start screening to catch retinoblastoma cases early in their course.
After I returned from my month at Angkor Hospital for Children, I began my formal studies for my MPH at Mailman where I learned more of the nuts and bolts of data analysis and program planning. Even with my head in the books, I continued to communicate with key staff members in Cambodia to set up the training and data collection plan and keep the project moving forward.
From my core courses to my Population and Family Health coursework in survey design and program planning, my Mailman education prepared me to plan my red reflex training program in a way that could create long-lasting change. My coursework also showed me how to responsibly collect both pre- and post-data from the program so that it could be effectively evaluated and shared with the communities in medicine and public health.
Once I was back in Siem Reap in the summer of 2016, I collected baseline data, implemented training, smoothed over problems, and ultimately collected post-intervention data. As I trained physicians, nurses, and medical students, I was consistently impressed with the new skills of my trainees. I met with my point people, Dr. Phara Khauv and Dr. Vireak Prom, on a weekly basis to discuss successes and setbacks as well as formulate a plan for maintenance after my time in Cambodia came to an end. This too was built on my Mailman background in planning for sustainable, systemic change.
The results we have generated so far describe the short-term effectiveness of training and the elements that could be essential to others who plan to train people in similar low-resource settings. We have been fortunate enough to have our abstract accepted for presentation at multiple conferences including the national Pediatric Academic Societies conference, and we are currently finalizing a manuscript for submission.
We hope to detect some early cases of retinoblastoma before they advance into late-stage tumors like the eye-replacing one that first led me to combat the drastic effects of retinoblastoma. This disease is high-impact but fairly low-frequency, so it will take a long period of time—with many patients screened—before we will be able to detect any retinoblastoma-specific decreases in death and loss of eye function. But for now our challenge is to ensure that screening continues in order to generate enough data to show longterm changes in morbidity and mortality.
My road to this project has been a long one. I first became acquainted with public health as a concept when I was stationed with the Peace Corps in Cambodia working in rural Dang Tung, Kampot, as a high school English teacher and youth development worker from 2008-2010. While serving there, I realized that combining a medical doctorate with a master’s degree in public health would allow me to provide the direct service that fires me up while also enabling me to work toward preventing the root causes of illnesses before patients are brought to my doorstep.
Now, almost seven years after completing the Peace Corps and only weeks from graduation with my MD and MPH, I am thrilled that I found a meaningful way to contribute again to enhancing the lives and longterm health of Cambodian youth. The synergy of skills in both prevention and treatment afforded me by my two degrees has brought me to this point—one I first imagined many years ago.
As I start my residency this July in pediatrics at the University of Pittsburgh Medical Center, I plan to continue developing as a clinician and researcher towards a career dedicated to serving children and adolescents both at home and abroad.
Lauren Bell, MD/MPH '17, grew up in Memphis, TN and graduated with a double major in Comparative Literature and Society and Hispanic Studies from Columbia College in 2008 before joining the Peace Corps and serving for two years in Cambodia. She returned to complete her premedical studies at Bryn Mawr before pursuing her MD/MPH, and has worked in education-related programming from the pueblos jovenes outside Lima, Peru to low-income public schools in Philadelphia.
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