A survey conducted by Harris Poll on behalf of The Michael J. Fox Foundation and AbbVie in early 2014 found significant knowledge gaps among people living with Parkinson’s disease (PD) and their families or caregivers. The results reveal that information and specialized care can help patients become more engaged in their own treatment and in the Parkinson’s community.
The survey found patients are under-informed about treatments for their current PD symptoms and how it may change or progress in the future. Only about half of patients reported feeling “informed or very informed” about living with PD (53 percent) and how to understand if their disease is progressing (51 percent). Further, only 48 percent of PD patients and 38 percent of caregivers reported feeling informed about where to turn to for support or information.
This knowledge gap extends into patients’ awareness about specialty care for their disease. Fewer than half of patients surveyed (48 percent) were able to identify the role of a movement disorder specialist (a neurologist with additional training in movement disorders like Parkinson’s) and only 28 percent are currently being seen by this type of doctor. However, based on patients who do see a movement disorder specialist, there are benefits to seeking this type of care. Those who see a movement disorder specialist as their main doctor reported feeling significantly more informed about basic issues in managing PD, including diagnosis (89 percent of patients who see a movement disorder specialist, versus 70 percent who see a general neurologist); and PD progression (76 percent of patients who see a movement disorder specialist, versus 54 percent who see a general neurologist).
Partners in Parkinson’s, a collaboration between The Michael J. Fox Foundation and AbbVie, aims to connect patients and their families with resources, including specialists, in their communities. The program will host eight events across the United States in 2015, focusing on further understanding a PD diagnosis and progression, and how building a team of care providers, including a movement disorder specialist, can help optimize one’s care. Learn more or find an event near you.
A full topline summary of the survey findings and an infographic are available at partnersinparkinsons.org.