UPDATE: The Economic Burden Survey is now available to the Parkinson's community. (Please do not participate in the survey again if you have already taken it through Fox Insight.)
A Parkinson's disease diagnosis often comes with an economic toll for patients, their family members and care partners. Some expenses can be quantified, such as co-pays for doctor's visits and medications, but others are more difficult to capture, such as taking time off work.
"The Economic Burden of Parkinson's Disease" is a new study that seeks to understand more of the financial costs associated with Parkinson's. The study is sponsored by The Michael J. Fox Foundation (MJFF), with support from the Parkinson's Foundation, several industry groups (Acadia, Acorda, Adamas and Biogen), the American Parkinson Disease Association and The Parkinson Alliance (with the potential for additional organizations to join in the future).
The Lewin Group, a health care consulting firm, will conduct the study, looking at de-identified data from the Centers for Medicare and Medicaid Services, the Centers for Disease Control and Prevention and the Bureau of Labor Statistics, among other government agencies, to investigate how much patients pay for their medical care. Study researchers will use these data to examine how leaving the workforce or reducing work hours -- whether it's due to living with Parkinson's or caring for a loved one with the disease -- affects family finances.
Gaining Insights Directly from the Parkinson's Community
As part of the study, researchers will deploy a survey to people with Parkinson's and their families to learn more about the economic impact of the disease. In addition to asking about the topics mentioned above, the survey will gather information on expenses that aren't easy to assess, such as time spent providing unpaid care to a family member.
The survey will initially launch through Fox Insight, MJFF's online clinical study designed to learn more about the lived experience of Parkinson's, and will remain open throughout September.
"Symptoms are just one aspect of Parkinson's. We all know that the disease can affect quality of life in many ways, including impacting family finances," says Jamie Hamilton, PhD, MJFF associate director, research programs. "The patient- and family-reported data Fox Insight collects is key to helping researchers, policymakers and other stakeholders look at the disease holistically and understand the many facets of life with Parkinson's."
In mid-October, the survey will be made available to the broader MJFF community (stay tuned to your email for more details). At the same time, members of the Foundation's Unified Parkinson's Advocacy Council will share the survey with their communities to gain further perspectives on this important issue.
Informing Research and Policy Goals
The insights gleaned from this study, expected to be made available in early 2019, will be shared with members of Congress so they can better understand how much Parkinson's costs the United States and how they can play a role in reducing the economic burden of the disease. MJFF will use these findings as we advocate for increased federal funding for research and other policy changes that support access to affordable care.
Interested in sharing your experiences with researchers in surveys like this? Visit foxinsight.org to learn more.