Spinal cord injuries (SCI) that result in paralysis are devastating, life-changing events for those affected. Patients deal with significant, irreversible changes to their mobility, bowel and bladder functioning, independence and lifestyle. Understandably, these changes are often associated with symptoms of anxiety and depression.

The initial psychological hurdle can be significant. Indeed, it is not surprising that those who have sustained such injuries tend to report higher levels of anxiety and depression than the general population. The negative emotional functioning that accompanies SCI can make an already difficult situation even harder, with psychological effects that can linger long after the individual has been discharged from inpatient rehabilitation and ostensibly adjusted to their new lifestyle.

To help ensure that individuals with spinal cord injuries are living the fullest lives that they can, it is important that health care professionals can identify and treat these psychological symptoms, which may not always be readily apparent—even to the patients themselves.

To help with this issue, researchers from the University of Delaware’s Center for Health Assessment Research and Translation (CHART), led by David Tulsky, have been working to develop an innovative electronic health (e-health) tool that includes computer-administered  assessments and resources to help identify symptoms and provide self-management strategies for SCI patients suffering from anxiety and depression. The name of the system is “iManage-SCI” and the initial development was funded by a grant from the Craig H. Neilsen Foundation. The center is part of the College of Health Sciences.

iManage-SCI consists of an online program where participants first complete an assessment to determine their levels of anxiety and depression. Based on how they score, they are then shown animated videos that walk them through brief, self-management skills training videos tailored to their individual needs.  

“Customization is a critical component of this program,” said Tulsky, director of CHART. “Not only is each participant provided with individualized self-management strategies based on the severity level of their symptoms, but the entire tool itself is SCI-specific and designed to guide each individual within a context relevant to their own unique needs and lifestyle.”

For instance, the animated videos will present an individual in a wheelchair, and an individual with tetraplegia will be shown a different set of videos than someone with paraplegia.  

“We believe this tool has tremendous potential to help improve the lives of individuals with SCI,” Tulsky said. They’re not the only ones who think so. Tulsky’s team was recently selected by the Department of Defense’s Spinal Cord Injury Research Program to receive approximately $1.75 million over the course of three years to implement a pilot clinical trial of the program. The trial is scheduled to take place next year at both the Kessler Foundation and the East Orange Veterans Affairs Medical Center in New Jersey.

Pamela Kisala, associate scientist at CHART, said the hard work on the project has been worthwhile.

“Spinal cord injuries are sudden, devastating events for individuals, and sometimes the full extent of the psychological toll of adjusting to one’s injury can be hidden and remain inadequately addressed," Kisala said. “The fact that we have the opportunity to help people identify problems they might not even realize are there, and thereby help to improve their daily lives — it makes the work really rewarding.”

The program is the by-product of nearly 15 years of work. Tulsky and Kisala, in collaboration with the Kessler Foundation and David Victorson of Northwestern University’s Department of Medical Social Sciences, have worked extensively with adult SCI patients and SCI clinicians over the years to develop the Spinal Cord Injury – Quality of Life (SCI-QOL) measurement system. The SCI-QOL measurement system is intended to help SCI researchers and clinicians measure a diverse set of patient-reported health outcomes in a reliable, valid and SCI-relevant way over time.

Through this work, the team has compiled a large bank of useful patient-reported outcomes (PRO) data related to quality of life for individuals with spinal cord injuries, which has allowed them to fine-tune measurement scales for a variety of different outcome areas. This includes many areas other than anxiety and depression, such as mobility, resilience, pain, bowel and bladder management and social outcomes.

“We’re very pleased with the work we are doing to develop this tool to help individuals with anxiety and depression, but this is only the tip of the iceberg,” said Tulsky. “There’s great potential to expand our capabilities in the future, using our underlying research to develop new assessment tools that better serve the needs of SCI patients in a variety of different areas.”