Research Aims to Help People Aging with Spinal Cord Injury

Due to enhancements in health care and technology, people with spinal cord injury (SCI) are living longer, and the need is increasing for research into how to best provide care as these individuals adapt to challenges brought on by aging. An SCI Model Systems grant, awarded to TIRR Memorial Hermann earlier this year, is enabling the development of an innovative health promotion program aimed at engaging people with SCI, providing them with tailored education and peer engagement designed to address their unique challenges.

“We build our research based upon input from consumers regarding important issues they are facing,” says Susan Robinson-Whelen, PhD, an investigator at the TIRR Memorial Hermann Spinal Cord Injury and Disability Research Center. “This project came about in part from focus groups we held when we were approaching the Model Systems grant application and trying to narrow down what we wanted to explore.”

Feedback, as communicated to Dr. Robinson-Whelen and her colleagues, was loud and clear.

“Aging was a significant issue, and with it came a lot of challenges,” Dr. Robinson-Whelen notes. “Studying aging, and particularly developing an intervention program for people who are aging with SCI, was something they felt was a strong need.”

One community advisor commented how, following SCI, one is surrounded by support and encouragement, with whole teams of specialists dedicated to teaching you how to live with this injury. However, once returned to home and the community, as the years pass, aging presents a myriad of changes and addressing them can often feel like a task that is left to be handled alone.

Informed by this feedback, Dr. Robinson-Whelen and her team—which includes Heather Taylor, PhD, director of TIRR Memorial Hermann’s Spinal Cord Injury and Disability Research Center, and Rosemary Hughes, PhD, of the University of Montana’s Rural Institute on Inclusive Communities—began to develop the Living Longer and Stronger with Spinal Cord Injury (LLS) program.

“We are now collecting data on people participating in the SCI Model System Study who are 50 years postinjury,” Dr. Robinson-Whelen explains. “Due to advancements, people with SCI are living longer. In addition, people are experiencing their injuries later in life on average. Yet, their needs haven’t always been well addressed. People are living long, full lives and want to be independent as they age.”

While living longer is a welcome development, it presents multiple challenges. For example, people with SCI acquire age-related conditions such as heart disease, diabetes and high blood pressure at younger ages than others—a process referred to as accelerated aging. In addition, people with SCI have many secondary health conditions that affect them as a result of their condition. “As people age, they are not only progressing into the normal health conditions that come along with aging, but they may experience an exacerbation of secondary health conditions,” Dr. Robinson-Whelen says.

As the investigators learned from their community advisors, the issues encountered by the people aging with SCI extended well beyond the physical. Potential stresses include challenges associated with aging caregivers, shrinking social networks and adapting to the psychological effects of getting older.

“Initially, when we were outlining what this intervention would look like, we were primarily focused on physical health conditions,” Dr. Robinson-Whelen explains. “When we then met with our community advisors, they strongly emphasized psychological and social needs. Networks dwindle at the same time that needs increase. A core message of the program is to understand that change is natural, expected and necessary, and to proactively embrace that change rather than resist it. Across the board, there is the overlay of the psychological impact of the many changes they are facing.”

The LLS program was developed in close partnership with two senior advisors who are people living with SCI, a community advisory board of people aging with SCI and a medical and scientific advisory board. The program consists of eight weekly two-hour group sessions hosted on Zoom and includes individuals with SCI from across the United States. Participants will include people with SCI who have been living with their injuries for at least 15 years, or who are at least 45 years of age. Each cohort—the first of which is already enrolled—will consist of 36 individuals: 20 randomized to an intervention group and 16 to a control group. Each of the group sessions will engage a peer co-facilitator who is living with SCI.

“This type of involvement is critical in intervention programs,” Dr. Robinson-Whelen notes.

Sessions will include information and educational content, group discussion, action planning and relaxation exercises. Participants will be provided with a handbook that includes details on the topics of discussion, and resources to aid them in putting what they have learned into action.

Session topics will include:

• Managing pain
• Managing fatigue
• Preventing falls
• Caring for aging skin, muscles, bones, and joints
• Maintaining a healthy weight
• Staying physically active
• Maintaining bowel and bladder health
• Promoting psychological health
• Staying connected and safe in relationships

“Core features of the program include goal setting and action planning,” Dr. Robinson-Whelen says, adding that group discussion allows for peer-to-peer sharing of important tips and recommendations. “There is a real power to sharing experiences. Some of these tips may not be easy to find—even physicians may not know them. No one knows better than those who are living with SCI.”

To date, the team has had an amazing community response to their effort, enrollment for which will continue through the early fall of 2025. People with SCI who may be interested in participating in the study are invited to call (713) 797-7572 or email TIRR.LLSstudy@uth.tmc.edu.