The Texas Model Spinal Cord Injury System (TMSCIS) at TIRR Memorial Hermann has been funded by the National Institute on Disability, Independent Living and Rehabilitation Research (NIDILRR) from 2016 through 2021. NIDILRR awards SCI Model System Center grants to institutions that are national leaders in medical research and patient care and provide the highest level of comprehensive specialty services from the point of injury through rehabilitation and reentry into full community life.
SCIDR’s TMSCIS is one of four original SCI Model Systems funded beginning in 1973, and has been the sixth largest contributor to the National SCI Database of the 14 SCI Model Systems sites. TMSCIS enrolls an average of more than 50 patients in the database each year. SCIDR was the first center to conduct 40-year follow-up interviews on those early research participants, and the Center’s research team continues to follow study participants over time at five-year-intervals, adding to its rich longitudinal database.
“During the current funding cycle, the Texas Model Spinal Cord Injury System will continue that same high level of contribution to the National SCI Database,” Dr. Taylor says. “Our team includes research medical director Dr. Argyrios Stampas, clinical medical director Dr. Matthew Davis, co-investigators Dr. Margaret Nosek, Dr. Susan Robinson-Whelen, Dr. Lisa Wenzel, and Dr. Rosemary Hughes, senior advisor Dr. Bill Donovan, and our medical advisors and consultants. In addition, we’ll partner closely with our National Community Advisory Board of people with SCI to conduct a site-specific clinical trial of our psychological health promotion intervention for women with SCI, the first-ever group intervention designed to address the specific psychological needs of women with SCI.”
Delivered online through the 3-D virtual world of Second Life and entitled “Zest: Promoting the Psychological Health of Women with SCI,” the clinical trial will be led by principal investigator Susan Robinson-Whelen, PhD, an assistant professor of physical medicine and rehabilitation at Baylor College of Medicine, senior investigator for the Center for Research on Women with Disabilities (CROWD) and a scientist at SCIDR. “Women comprise only about 20% of people with spinal cord injury. As a result, most of the literature on SCI is heavily focused on men,” Dr. Robinson-Whelen says. “In light of the national mandate to include women in all research, we’re very excited to be moving this forward through an online platform accessible to women around the country.”
Drs. Robinson-Whelen, Nosek and Hughes join Dr. Taylor in bringing their expertise on the health and wellness of women with disabilities to the TMSCIS research team through their involvement with CROWD, where they have developed interventions for women with disabilities for many years. “Primary outcome measures for this new psychological health study are enhanced self-esteem, reduced depression and increased life satisfaction,” Dr. Robinson-Whelen says. “It’s a very participatory intervention, built to increase self-efficacy and social connectedness and reduce perceived stress among women with SCI through activities, discussions, homework assignments and skill-building activities.”
SCIDR used the Second Life platform with good results in a pilot project conducted in fall 2015. “The response to the intervention in our pilot study was positive and encouraging,” Dr. Robinson-Whelen says. “There was strong interest from women with SCI across the country. There was no attrition in the control group and only 16.7% attrition in the intervention group, with two women dropping out due to unexpected life events. Attendance was good among the women who remained in the intervention group, with participants attending more than 80% of sessions on average.”
The positive response to the program was most notable in the post-intervention survey. All 10 women rated the program favorably and indicated that they had made positive changes in their lives as a result of the intervention. When asked, “What did you like best about the program?” all respondents mentioned meeting, sharing or connecting with other women with SCI. There was also a positive response to Second Life as a platform for the intervention.
“Some participants had never had the opportunity to talk to other women with SCI,” Dr. Robinson-Whelen says. “They said they found the experience educational and empowering. After the pilot project, some of the women continued to meet online on their own. Although we did not specifically recruit women who were depressed, in our data analysis we did find a significant reduction in depression.”
The new TMSCIS site study will test the intervention with a national sample of 192 women with SCI randomly assigned to either the intervention or a control group. Assessments will be done pre- and post-intervention, with a six-month follow-up. Co-principal investigator of the site study with Dr. Robinson-Whelen is Dr. Margaret Nosek, professor of physical medicine and rehabilitation at Baylor College of Medicine, founder and executive director of CROWD and senior scientist at TIRR Memorial Hermann. Co-investigators are Dr. Taylor; Rosemary Hughes, PhD, senior research scientist at the University of Montana; and Lisa Wenzel, MD, assistant professor of physical medicine and rehabilitation at Baylor College of Medicine and an attending physician at TIRR Memorial Hermann.
As part of the TMSCIS grant, the researchers also will participate in four collaborative module projects on important concerns for people with SCI, including the experience of pain, complementary integrative health care to manage pain, early predictors of rehabilitation outcomes and the therapeutic use of robotic exoskeletons. “SCIDR will also develop consumer-oriented educational materials and disseminate findings to consumer and professional audiences that we hope will affect decisions about physical activity made by people with SCI, as well as medical advice and care provided to persons with SCI,” Dr. Taylor says. “Ultimately the projects have high potential for improving the understanding of disability, health and health promotion in people with SCI, with significant clinical and public health policy implications.”