In the wake of a traumatic injury, accident, or disaster, survivors often experience troubling effects that may surface long after the initial event and persist over time. These long-term effects include post-traumatic stress (PTS) and other issues such as depression, post-concussive symptoms, and pain. Collectively, they are known as adverse post-traumatic neuropsychiatric sequelae, or APNS.
Each year, more than 40 million Americans are treated for trauma exposure in emergency departments. But there is no way for these survivors, or the health professionals who treat them, to know whether they will eventually develop APNS. More research could lead to a better understanding of how APNS issues develop, which patients are more vulnerable, and how to prevent APNS. This could mean a better quality of life for hundreds of millions of trauma survivors around the globe.
To advance the understanding of APNS, the National Institutes of Health, along with several foundations and industry partners, are funding the most comprehensive longitudinal study of trauma survivors to date. Known as the AURORA Study, this project follows 5,000 trauma survivors for a full year after they are discharged from the emergency department.
The University of North Carolina at Chapel Hill is leading this five-year study, which involves more than 25 emergency departments and more than a dozen other partner institutions across the United States. RTI International designed and hosts a tailored information management system that enables researchers to collect high-quality physiologic, biologic, neurocognitive, sensor, symptom, and health outcome assessments data on the trauma survivors.
A Complex Ecological Monitoring System for Tracking Symptoms as They Develop
The study begins in the emergency department. When individual trauma survivors are discharged, they receive a wearable device and have an AURORA app installed on their smartphones. For the first eight weeks after the traumatic event, participants complete weekly online neurocognitive assessments. Our system reminds them to complete study activities.
In the ninth week, monitoring becomes less intense, with surveys and assessments at the three-, six-, and nine-month marks. All 5,000 participants will take a survey one year after their discharge.
Throughout the study period, smaller samples of participants will be selected for saliva samples, blood draws, and functional brain imaging. This type of data will complement the online assessments and surveys, providing a complete biobehavioral picture of life after trauma.
The combination of physiological and psychological assessments, along with daily sensor elements, the large sample size, and the fact that participants are followed for a year after first visiting the emergency room on different dates, make AURORA an unusually complicated study. To develop an information management system that meets AURORA’s needs, we drew on our experience with longitudinal health studies along with our ability to incorporate multiple types of data collection into the survey protocol.
Our solution accounts for individual schedule variations and preferences and allows for flexibility as the study progresses. Further, it provides a centralized, secure place for our multiple partners to store their data, including participants’ personal and health information.
Paving the Way for Improved Treatment of PTS and Other Issues
The goal of AURORA is to achieve a greater scientific understanding of the long-term effects of trauma. By measuring the biobehavioral signs of APNS as they appear, we will be able to investigate risk factors and diagnostics and develop a deeper understanding of these outcomes. Risk factors sometimes predate the trauma, but they could be related to the traumatic event itself, or to the recovery process. We will then be able to focus on generating clinical decision-support algorithms to help classify at-risk individuals and testing interventions to prevent APNS.
Society has grown to recognize that people whose traumatic experiences lead to prolonged suffering due to PTS have a treatable problem, no different than if they have other illnesses such as high blood pressure or diabetes. Until now, however, health care practitioners have had a limited understanding of how these problems develop—and no way to tell why some people are affected more than others. AURORA has the potential to break through this barrier.
As of spring 2018, about half of our participating emergency departments had begun recruiting participants, allowing us to begin collecting data from hundreds of individuals. Their stories will help our research partners improve the lives of countless other trauma survivors in the years to come.