People diagnosed with Parkinson’s disease experience the same level of financial stress as someone dealing with advanced cancer even if they’re still working and receiving a paycheck. That’s an early finding from a five-year study into how to help people with the neurological movement disorder remain employed. People with Parkinson’s who were surveyed about their financial stress scored an average of 22 on a scale of zero to 44 that was created to measure worries related to medical issues. That’s the same level of financial stress reported by individuals undergoing months of chemotherapy, says Miriam Rafferty, PhD, a research scientist at the Shirley Ryan AbilityLab working with the Center for Rehabilitation Outcomes Research (CROR). Rafferty’s work is part of a $4.3 million grant from the National Institute on Disability, Independent Living and Rehabilitation Research (NIDILRR) that was awarded to CROR in 2018.
Sixty people with Parkinson’s who are employed agreed to participate in the study. The participants are interviewed at six-month intervals, a process that will continue for three years. Because recruitment was on a rolling basis, some participants have already completed their 24-month check-in while others aren’t as far along. An initial survey to gather baseline data found that “There are relatively high levels of financial stress in this population,” says Rafferty. “These are people within the first five years of diagnosis who are still employed. They may be worried they are going to have to quit their jobs.”
Between 40% to 50% of people in the study have early onset Parkinson’s, which means they are under 65 and in their prime earning years. They may be saving for retirement or have children they need to put through college. “People aren’t necessarily worried about themselves right now,” notes Sydney Achler, project coordinator on the study and the person conducting phone interviews with participants. “But there is anticipatory worrying about what may change and how they can prepare for disease progression. That’s part of the reason we’re trying to provide employment resources right now.”
My hope is that participants find a supportive social and emotional environment where they can discuss their experiences and share coping strategies.Miriam Rafferty, PhD
The financial stress is a cause of concern because it could affect the trajectory of the disease, says Han Su, PhD, a Northwestern University post-doctoral fellow who is working with Rafferty on the study. “If they put off treatment because of financial issues, that could make their condition worse,” she says. “They could end up with depression and anxiety. That’s the loop.”
The financial toxicity measure Rafferty’s team used to collect the data was created by a team at the University of Chicago that included David Cella, PhD, now the Chair of the Northwestern University’s Medical Social Sciences Department. The Comprehensive Score for Financial Toxicity (COST) measure was tested with more than 150 cancer patients undergoing chemotherapy for at least two months. The patient-reported measure proved to be both reliable and valid when patients were retested. It has since been used in studies of cancer patients around the world, including China, Italy and Australia. The idea to apply the COST measure to Parkinson’s patients was Rafferty’s.
Many people with Parkinson’s continue working to their full retirement age or beyond because of advances in treatment and the typical slow progression of the disease. In the early stages of Parkinson’s, most patients will only be talking with their neurologist and medical team, not broadening the conversation to include a vocational rehabilitation counselor. Those counselors could advise them on the best way to disclose their condition to an employer and, if needed, request reasonable accommodations that would help them continue to do their jobs. While neurologists can be very helpful in managing medications and other aspects of Parkinson’s treatment, they aren’t really equipped to handle conversations about employment issues, Rafferty says. By bringing in perspectives from physical therapists, occupational therapists, social workers and vocational rehabilitation counselors, Rafferty is seeking to create a “trans-disciplinary approach” to support people with Parkinson’s.
If they put off treatment because of financial issues, that could make their condition worseHan Su, PhD
Patients who are treated at the Shirley Ryan AbilityLab are more fortunate than many because the hospital has a vocational rehabilitation department where patients can receive counseling. But most Parkinson’s patients around the country will be treated at facilities without that resource. Even before the COVID-19 pandemic, Rafferty wanted to make such counseling services available virtually to people around the country. She applied for a $14,000 grant from the Parkinson’s Foundation to create a virtual vocational counseling service. The 12-month grant began in July 2020 and is now in a no-cost extension period.
Now, anyone in the country with Parkinson’s, not just those in the larger NIDILRR study, are eligible for up to four sessions with vocational rehabilitation counselors at the Shirley Ryan AbilityLab. In the first year, 14 people used the virtual service, but Rafferty thinks that’s because “People didn’t really know what it was.” She is hoping to find a new funder for the service, which only costs about $1,000 a year, and then spread the word more widely.
The Parkinson’s Foundation grant also paid for the creation of Parkinson’s Works, a support group for people with Parkinson’s who are employed or trying to find a job. Participation is free to anyone around the country and the group meets twice a month on Fridays. Sessions are moderated by a rehabilitation counselor at the Shirley Ryan AbilityLab. The purpose is to develop a sense of community among people with similar experiences in the workplace or job search process. “My hope is that participants find a supportive social and emotional environment where they can discuss their experiences and share coping strategies,” Rafferty says. “They don’t have to feel alone.”
If you are interested in more information about this or other studies for people with Parkinson's disease, please contact Sydney Achler at 312-238-7275 or firstname.lastname@example.org.