Big data is changing the way that many aspects of the world operate, and this includes the medical field. Recent research from Children’s Hospital of Philadelphia has shown that using standardized reporting of clinical data for seizures caused by various neurological disorders can be beneficial. It can help to provide the most important baseline information needed to determine which methods will work best to keep seizures under control for the patients. These findings were published in early June in Epilepsia.
Improved Data Recording Was Necessary
It’s well-known that doctors need to have efficient and reliable means of measuring outcomes to provide improvements in the epilepsy care they are providing to patients. Today, electronic medical records are often used for quality improvement and research. However, some of the most important elements for epilepsy outcome measures are not documented in a standardized format. This includes things like quality of life and seizure frequency. Without this information, it is more difficult for researchers to process data on a large scale.
How The Researchers Collected The Data and What They Found
The researchers at the Children’s Hospital of Philadelphia have worked to help standardize how clinical data is recorded when it comes to epilepsy visits. They utilized common data elements to make sure that the most important data could be captured in a way that was comparable across clinical visits and studies. The researchers in this study looked at results from using 12 months of common data elements in routine care for pediatric epilepsy.
Mark P. Fitzgerald, MD, Ph.D., is a pediatric neurologist at the Division of Neurology at the Children’s Hospital of Philadelphia, and he is the first author of the study. He said, “For those of us who treat pediatric epilepsy patients, we are constantly trying to assess how we’re doing and how we can improve the outcomes of our patients. This study provides us with the fundamental data that will serve as the foundation for how we treat our patients and inform how we achieve the best patient-centered outcomes possible.”
The study covered around a year and the researchers examined close to 1,700 visits from more than 1,000 individual patients that had childhood epilepsy. The visits were conducted by 32 providers in the hospital’s network.
Out of all of the patients, 43% of them had a seizure at least once a month. 17% had at least one seizure each day. 18% of the patients were seizure-free for at least one year. Many epilepsy syndromes were included, but the most common were Childhood Absence Epilepsy, Lennox-Gastaut Syndrome, and Dravet Syndrome. The study allowed the researchers to “quantify the absolute seizure burden, as well as changes in seizure burden over time and the differences between syndromes.”
It’s interesting to note that the study was conducted when the COVID-19 pandemic began, so the researchers made sure that they were assessing the use of telemedicine to record the information. They discovered that whether the patients were being assessed in-person or via telemedicine, the frequencies of seizures were comparable. The research also found that patients that had identified themselves as Latino or Hispanic were likelier to have ongoing seizures that got worse over time. This was especially true for those who were from areas that had lower median household incomes.
At this point, the Children’s Hospital of Philadelphia “is the only neurology program that generates this level of patient information from ongoing care rather than research studies only,” according to Ingo Helbig, MD, senior author and attending physician and director of the genomic and data science core of Epilepsy Neurogenetics Initiative at the Children’s Hospital of Philadelphia.