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People with early Parkinson’s disease experience levels of financial toxicity similar to those of people with advanced cancer


Financial hardship and stress from financial worries, or ‘financial toxicity,’ among people with early-stage Parkinson’s disease can be as high as that experienced by people with advanced cancer according to a new study published in the Archives of Physical Medicine and Rehabilitation. 

Investigators led by Miriam Rafferty, DPT, PhD, a research scientist in the Center for Rehabilitation Outcomes Research at Shirley Ryan AbilityLab, surveyed 60 individuals diagnosed with Parkinson's disease within the last five years. Over half of participants reported financial stress comparable to that of people with advanced cancer.

Parkinson's disease is a progressive neurological disorder whose primary symptoms include tremors, slowed or unintentional movements, stiffness or rigidity in the limbs and trunk and difficulties with balance and coordination. As the condition progresses, individuals may also experience non-motor symptoms such as cognitive changes, depression, sleep disturbances and issues with speech and swallowing. 

Parkinson’s disease can have a significant impact on paid employment, often resulting in reduced hours, leaving the workforce early and lower rates of employment compared to the general population. Reduced employment or loss of employment, combined with costly medical treatments that may require days off work, can have a significant economic impact.

Most studies on Parkinson’s disease and employment tend to be retrospective – they look back on what has already happened. But Rafferty, DPT, PhD, who is also Director of Implementation Science at Shirley Ryan AbilityLab, wanted to know more about how attitudes towards work and finances change over time. She and her team also sought to understand how changes in employment status among people with Parkinson’s disease may be associated with changes in quality of life soon after diagnosis.  

Rafferty and colleagues are following 60 employed people with early stage (less than five years since diagnosis) Parkinson’s disease. Every six months, participants complete surveys and interviews about their symptoms, employment and financial stress. Rafferty’s current findings are the result of the first surveys with participants and provide a baseline set of data. That data will be compared to the results of the same surveys conducted every six months over three years. 

“What we were surprised by in our baseline data is that our participants, who have been diagnosed fairly recently, are already experiencing levels of financial stress similar to the level of financial stress reported by people with advanced cancer in prior research,” says Rafferty, whose findings are published in Archives of Physical and Medical Rehabilitation. 

More than half of the study participants reported some degree of financial hardship associated with their disease. Higher levels of financial hardship were associated with reduced confidence in keeping a job and lower perceived workplace success. Higher financial hardship was also associated with reduced satisfaction with social activities and more depression and anxiety. 

Many healthcare professionals who see patients with Parkinson’s disease aren’t expecting their patients to have high levels of financial stress so soon after diagnosis, explains Rafferty. “Our research suggests that healthcare providers should ask their patients with Parkinson’s about financial hardship right at the beginning because it could impact quality of life,” says Rafferty. “Asking this question gives us a chance to refer people who say they are experiencing financial stress to social workers or if the stress is mostly related to employment, to vocational rehabilitation counselors or occupational therapists.” The question Rafferty and colleagues included in their survey about financial hardship was: “My Parkinson's disease has been a financial hardship to my family and me.”

Allen Heinemann, PhD and Sydney Achler, MPH, of Shirley Ryan AbilityLab; Masha Kocherginsky, PhD and Danny Bega, MD, of Northwestern University Feinberg School of Medicine; Kurt Johnson, PhD of the University of Washington School of Medicine and Han Su, RN, PhD, of Vanderbilt University School of Nursing and a former CROR post-doctoral fellow, are co-authors on the paper.

This work was supported by the Research and Training Center on Employment for People with Physical Disabilities in the Center for Rehabilitation Outcomes Research at Shirley Ryan AbilityLab and funded by the National Institute on Disability, Independent Living, and Rehabilitation Research (grant 90RTEM000101).

Read more from the Winter 2023 issue of CROR Outcomes