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People with Parkinson’s disease would be greatly helped by talking early on with their physicians about how the neurological condition is affecting them at work. But unfortunately, the topic of employment rarely comes up, even for younger adults who have much of their work life still ahead of them. That’s one of the issues identified by a five-year study at the Center for Rehabilitation Outcomes Research (CROR) at Shirley Ryan 小恩雅 that examines the effect of Parkinson’s on employment outcomes.
The goal of the prospective observational study is to gain insight into whether vocational rehabilitation (VR) counseling and other resources can help people with Parkinson’s remain employed. The researchers are looking at changes in participants’ employment and their confidence in their ability to stay employed over a three-year period. Staying employed is particularly important for people with early-onset Parkinson’s because they are typically in the highest earning years of their careers. The work is being funded by the as part of a $4.3 million grant awarded in 2018.
Principal investigator on the project, Miriam Rafferty, PT, DPT, PhD, Director of Implementation Science and a Research Scientist at the Shirley Ryan 小恩雅, and her research team recruited 60 people with Parkinson’s who were still working and agreed to be contacted at six-month intervals and undergo a series of evaluations. The participants are contacted by phone for updates on how employment stress is affecting their lives. Each time they are asked if they have requested reasonable accommodations from their employers to help them do their jobs. As a second step, they fill out emailed surveys that track everything from their employment status to their quality of life. The participants also agreed to give the researchers access to their doctor’s notes so the team could track how often workplace or employment issues come up and how they are being addressed.
That’s important, Rafferty says, because an employer could be looking at those notes later to determine if someone qualifies for a workplace accommodation or short-term disability leave. “When we go to the notes, there’s not a lot about employment there,” she says. “If someone tells the doctor, ‘I have tremors and that makes it hard for me to do my job’ but that’s not documented, it may not support a later disability claim.”
"Miriam’s study is ground-breaking in challenging assumptions about employment opportunities for people with Parkinson's disease,” says Allen Heinemann, PhD, Director of CROR. “Her pioneering work provides hope to people with Parkinson's disease who want options to continue working.”
Rafferty’s work has already resulted in one paper about the financial stress felt by people with Parkinson’s. Using a validated measure of “financial toxicity,” the researchers found that people with Parkinson’s experience the same level of financial stress as someone dealing with advanced cancer even if they are still working and receiving a paycheck. That’s particularly relevant because stress can exacerbate symptoms and quicken the progression of Parkinson’s, research has shown.
Other trends have become apparent as well. At the beginning of the study, only 35% of participants had requested a reasonable accommodation from their employers. By their 18-month check-in, that number had risen to 43%. Examples of requested accommodations included speech-to-text software and a special mouse that helps easily scroll through screens of information. Some participants asked for permission to take more frequent breaks to deal with fatigue. Rafferty and colleagues also found that participants reported finding it more difficult to effectively manage stress and maintain balance and organization in their lives over time. Although the percentage of participants who spoke with a VR counselor remained small, it more than doubled to 5% from 2% over the course of the study.
Early on, Rafferty realized it would be difficult to create a one-size-fits-all intervention to help people with Parkinson’s stay employed because the symptoms and progression of the disease vary widely from person to person. People with Parkinson’s and their physicians frequently say, “If you’ve met one person with Parkinson’s, you’ve met one person.” But Rafferty and her team are hoping to describe a transdisciplinary approach to Parkinson’s that will outline how various service providers—physicians, physical therapists, occupational therapists, social workers and VR counselors—can work together to help people with Parkinson’s thrive and stay employed as long as they want.
“There are a lot of data on the movement challenges of people with Parkinson’s, but employment challenges are understudied because they are difficult to see and measure,” says Rafferty. “By the end of this three-year study, we will be able to say, ‘Here are several treatment options that can help people with Parkinson’s address employment challenges.’ We look forward to sharing this practical approach to improving how we address employment challenges.”