Supporting Epilepsy Research in Bolivia
Peter Drucker, a business management expert, is credited with the phrase: “If you can’t measure it, you can’t improve it.” This refrain resonates with two of our Bolivian partners in Santa Cruz who are working to expand the base of knowledge on health issues that impact their patients.
Dr. Victor Cuéllar and Megan Lo at the Children’s Hospital in Santa Cruz.
Working as a pediatric neurologist, Dr. Victor Cuéllar noticed there were very few studies on the incidence of epilepsy in Bolivia. Determined to change this and improve the care of his patients, Dr. Cuéllar and his colleague, Dr. Shirley Martinez, began to collect data from their neurology service. But the public hospital where they work serves a population of 3.3 million people, and demand for their specialty is so high that patients often wait more than two months for an appointment. Balancing the need for research with the immediate needs of his patients, Dr. Cuéllar partnered with the Neurosurgery & Neurology Institute (NNI) for additional research support.
Earlier this year, Dr. Cuéllar began collaborating with two NNI partners, the UMass Chan Medical School (UMass) and the University of Illinois Chicago (UIC). UIC neurologist Dr. Jeffrey Loeb met with Drs. Cuéllar and Martinez in Santa Cruz in April to learn about their research interests. And Dr. Richard Moser, NNI President and UMass Neurosurgeon, arranged for additional support from UMass student, Megan Lo, who spent a month in Santa Cruz supporting Dr. Cuéllar’s research.
After her month-long immersion working at the Hospital de Niños in Santa Cruz, Megan shared the following reflections:
My goal in Santa Cruz was to support the research endeavors of Drs. Cuéllar and Martinez to improve epilepsy care among the pediatric population. I learned that Santa Cruz is the fastest growing city in the country, and two neurologists for the pediatric population are insufficient to care for all the children’s needs. I often saw families waiting in extremely long lines outside the hospital before it opened hoping for an opportunity to speak with a doctor. Children have free access to this care through [the universal healthcare program] SUS or Sistema Única de Salud. But the limited resources and difficulties navigating the system make access to timely care a challenge for many.
Despite his busy days seeing patients, Dr. Cuéllar is passionate about contributing to medical research. He had been keeping a register of consult patients, and my first task was to sift through the six hundred or so patients from the previous eight months. One third of these had epilepsy. These patients faced many challenges after receiving their diagnoses: some did not respond to epilepsy medications, others were unaware of the severity or risk factors they faced with this disorder, and a variety of barriers posed challenges to timely follow-up care.
Our first step to increase patient and provider knowledge of pediatric epilepsy is to collect information describing this specific population. For example, the occurrence of seizures due to neurocysticercosis, a parasitic infection caused by a tapeworm, is well documented throughout Latin America, but it is less commonly a cause in Bolivia. Through his research, Dr. Cuéllar hopes to investigate other perinatal factors that may predispose Bolivian children to developing epilepsy, such as malnourishment, microcephaly, trauma, and premature birth. Minimal studies on these factors have been produced from Bolivia or elsewhere in Latin America.
Although this lack of previous data may seem discouraging, Dr. Cuéllar sees it as an opportunity. New research could expand the base of knowledge and better inform care providers about the health of the population they serve.
We determined that first, there is a need for a more complete electronic database of patient information to analyze for future research. Together, Dr. Cuéllar and I created a new electronic form to be filled out for each patient which will quantify diagnoses, related comorbidities, and associated risk factors. There will be sufficient data in a year or so to analyze the prevalence of epilepsy and other neurological disorders in the pediatric population here and to describe associated comorbidities and risk factors.
I am grateful to the many people who made this opportunity possible, including my host, Dr. Patricia Arteaga, Drs. Cuellar and Martinez, the NNI, and all of the patients, residents, and doctors I had the opportunity to meet at the Hospital de Niños. Not only did I learn so much from them in the medical setting, but I developed friendships, learning about the food, culture, and generous hospitality of the people of Santa Cruz.
I intend to maintain this partnership between my medical school, the neurology department at Hospital de Niños, and the NNI. I hope to continue to be part of the bridge between US and Bolivian medical workers striving to improve epilepsy knowledge and treatment.
Thanks to the work of dedicated neurologists and key partners, the burden of epilepsy in Latin America is steadily decreasing. However, there is much work to do. Studies like this are a promising step in addressing the epilepsy treatment gap in Bolivia. The NNI will continue to support the work of Bolivian neurologists and forge alliances for improving epilepsy care. We are grateful for the leadership of our Bolivian partners in this area and look forward to exciting new collaborations, from the primary care level to surgical solutions, to increase access to timely and effective care.
The Neurosurgery & Neurology Institute is a program of Solidarity Bridge committed to alleviating the suffering, death and disability from neurological disorders and injuries that disproportionately impact patients in the countries where we serve. Our work is focused in the areas of education, resource mobilization, research and patient service.