In 1990 Anthony Hinton was parking cars outside an upscale Chicago hotel when he was hit by a drunk driver. Doctors at nearby Northwestern Memorial Hospital stabilized his condition but the 27-year-old was permanently paralyzed from the chest down. After three weeks of hospitalization, he was wheeled through underground tunnels to the Rehabilitation Institute of Chicago (RIC)—now known as Shirley Ryan AbilityLab—where physicians and therapists began assessing his condition and configuring a rehabilitation plan. Hinton says his doctors, nurses and therapists “did a good job of explaining things to me,” but there were times when they used unfamiliar language that left him baffled. “There’s a competitive pattern,” he says. “When they are communicating among themselves in front of patients, doctors sometimes use technical jargon that is difficult for patients to grasp.”
Hinton, now 59, remembered that experience decades later when he joined an Advisory Council through the Center for Rehabilitation Outcomes Research (CROR) at the Shirley Ryan AbilityLab. The council is made up of people with disabilities, clinicians, educators, and advocates in the disability field. The group serves as a sounding board for CROR researchers working on a project that aims to make rehabilitation assessments more understandable for people with disabilities and their families. Hinton is a vocal proponent of the effort. “We’re helping to build a new type of assessment tool and putting it in a format that therapists, patients – everyone involved – can have input and understand it.”
CROR is home to the Rehabilitation Measures Database (RMD), an online collection of more than 500 measurement tools that cover everything from cognitive functioning to walking. Created by CROR and launched in 2011, it was originally conceived of as a resource for rehabilitation clinicians who would be familiar with many medical terms and acronyms, says CROR Associate Director Linda Ehrlich-Jones, RN, PhD. The hope was that by creating a repository for measurement assessments, busy clinicians would be more inclined to use them, promoting the practice of evidence-based medicine in the rehabilitation field.
People are given a bunch of tests in rehabilitation, but evidence shows that people want to participate more in their care and understand more.Jenny Burns
The RMD wasn’t initially viewed through the lens of patients or their care partners, adds CROR researcher Jenny Burns, who is working on the infographics. “People are given a bunch of tests in rehabilitation, but evidence shows that people want to participate more in their care and understand more,” Burns says. “They want to know what the purpose of the test is and how that will be used to develop their care plan. Basically, they want to know if they are making progress.”
When talking with focus groups of patients and their care partners, the researchers found that many had very negative feelings about the assessments they had been given. Some thought they were mainly used to satisfy insurance companies or check boxes for therapists—some assessments are mandated by Medicare and Medicaid for reimbursement of rehabilitation services. Burns says she wasn’t completely surprised by the negativity. “People feel like assessments are not individual enough. It doesn’t make sense to people that you give the same test to people with different disabilities,” she says. “But the questions they are answering are supposed to correspond to functioning in real life. Depending on their score, a person may benefit optimally from home therapy or outpatient services or certain assistive equipment.”
In 2020, Ehrlich-Jones and her co-PI, CROR Director Allen Heinemann, received a $1 million five-year “knowledge translation” grant from the National Institute on Disability, Independent Living and Rehabilitation Research (NIDILRR) to make the RMD more consumer-friendly by adding infographics to the technical descriptions of the assessments. The effort turned out to be more complicated than it seemed initially, Burns says. In addition to translating medical jargon into language understandable to people with different literacy levels, the infographics also needed to comply with accessibility guidelines to ensure a screen reader could read the information to someone with a visual impairment. It also involved inserting invisible tags so that the computer would understand what order to read things in.
We’ve definitely got some new and exciting things for the RMD coming this year.Linda Ehrlich-Jones, RN, PhD
Researchers tackled the Timed Up and Go test (TUG) as their first assignment. The assessment of functional mobility measures how much time it takes a person to get up from a chair, walk three meters to a marker, turn and then walk back and sit down. It is used by therapists to assess someone’s ability to walk, the quality of their gait and posture. The initial version of the infographic used attention-getting colors but the feedback from the focus groups was that the bright shades were distracting. The participants also preferred a vertical layout to a horizontal one and wanted a clearer message of what the test was for. It was important, they added, that the description be more person-centered. “We’ve been trained to think about people’s deficits, but you can always spin that to their abilities,” says Burns. After five versions of the TUG test infographic, it was posted on the RMD. The research team plans to survey RMD users this summer to get feedback on the early infographics from a broad audience.
Moving forward, the researchers want to create a template that can be reused with various measures instead of starting from scratch each time. “The goal is to have a plug-and-play template,” Burns says. The team doesn’t plan to create an infographic for all 500 RMD measures, which would be very time-consuming. Instead, it is focusing first on the 10 measures that are most frequently used in rehabilitation.
Part of the grant funding will be used to update educational videos on the RMD site, some of them dating back to 2009. The videos created then were mostly recordings of seminars and workshops. The new videos, which will focus on measurement concepts like reliability and sensitivity to change, will be scripted, shorter and have better production values. “It’s an opportunity for us to try something new,” says Ehrlich-Jones. “We’ve definitely got some new and exciting things for the RMD coming this year.”