Study highlights factors influencing SCI patients’ participation in managing their health
After sustaining a traumatic spinal-cord injury (TSCI), health management becomes complicated and often requires a high level of knowledge, skill and confidence to be effective.
According to Ted Barrios, PhD, a neuropsychology fellow in physical medicine and rehabilitation at the University of Michigan, there is an association between various emotional, attitudinal and health factors with health care engagement.
These factors are important contributors to independent living and quality of life for adults with TSCI. Barrios presented the results of a quantitative, multi-site research project looking at psychological factors and their impact on health care engagement among adults with TSCI during a breakout session on Thursday’s final day of the Paralyzed Veterans of America Healthcare Summit + Expo at the Renaissance Orlando at SeaWorld in Orlando, Fla.
“This is not something that’s for the faint of heart by any means, and it requires a lot of very complex skills, a lot of sort of flexible decision trees and things like that,” Barrios says. “And something that we talk about is that simple adherence to a prescribed self-management plan is really not sufficient for folks who have sustained traumatic spinal-cord injuries.
It really requires that flexibility, sort of thinking flexibly, being very aware and sensitive to changing variables and things like that. And this is sort of that exploring in terms of physical factors and personal factors, environmental factors, all of these things that are liable to change and are outside of their control of someone themselves who sustained this this injury. So, you need to be able to take in all of this information and really be flexible and sort of open.”
Barrios says as the health care landscape has shifted away from a paternalistic, “doctor-knows-best” approach to health care, where doctors tell the patient what to do, it’s become more incumbent upon the patient to be engaged in his or her health care. Barrios says it’s created more of a two-way street, but it requires some confidence and comfort with making those types of decisions.
“Health care providers benefit from increased patient engagement because patients can offer a new perspective,” Barrios says. “They can offer practical solutions in terms of lived experience and things that work well for them don’t work well for them, and they can shed light on potential problems before they manifest.”
Barrios’ research team started by looking at predictors of psychological flourishing, or mental health. Three factors identified as corresponding with psychological flourishing were social self-perceptions and how patients view themselves with respect to peers; patient-reported health ratings; and marital status. The team also looked at the association between other factors, such as neurological level of injury, completeness, secondary conditions, level of education and household income and income status.
The researchers collected data from 78 predominantly white participants from 13 states who were diverse in age and had completed two to three years of college. A majority of participants weren’t employed at the time of the study and were an average of 20 years post-injury. To measure health care engagement, they used the Patient Activation Measure (PAM), a 13-item self-report tool.
Using PAM, researchers classified participants into four engagement groups:
- Disengaged and overwhelmed
- Becoming aware, still struggling (realizing there are ways to become more involved and expressing an interest in matters, but still feeling overwhelmed)
- Taking action (taking steps to become more engaged)
- Continuing behaviors and engaging further
Barrios says a majority of study participants fell into the fourth category. However, 16 participants fell into the first and second groups. The research team then compared participants across the engagement level, looking at several criteria, including injury characteristics, medical comorbidities, socioeconomic factors, grit (scored by answers to 12 questions that measure a persevering mentality), attitudinal factors, patient-reported health ratings and functional ratings.
A post-hoc analysis found that the group most engaged in their own health care was also more highly educated and reported fewer depression, anxiety and stress symptoms. But Barrios says having more secondary conditions was an important correlate of whether a participant was in the “taking action” group or “engaging further” group.
“It might be more difficult and there might be sort of a higher learning curve to become more independent in terms of health care engagement if there are more secondary conditions,” he says.
In addition, participants who rated their cognitive functioning as stronger tended to be in the third or fourth groups.
In terms of clinical implications, Barrios says health care engagement can be thought of as a cycle, although the study doesn’t show cause and effect.
Barrios also says their findings form a foundation that warrant further studies with larger, more diverse samples, as well as qualitative work.
“I’d be really curious to hear from folks with spinal-cord injury that that hypothesis I offered that having more secondary conditions sort of increases the complexity and sort of increases the difficulty in being a really engaged, kind of active participant in some of those discussions,” Barrios says. “So, I think qualitative research building on some of these quantitative findings might be a nice way to sort of explore that a little bit more.”
