Survey reveals knowledge gaps among Parkinson's patients and caregivers
Information and specialized care can help patients become more engaged in their own treatment and in the Parkinson's disease (PD) community, according to a recent online survey of more than 1,500 PD patients, caregivers and physicians conducted by Harris Poll on behalf of the Michael J. Fox Foundation and AbbVie.
"When patients get to the right doctor, it often leads to better optimization of care, greater engagement in the Parkinson's community and more participation in clinical research critical to developing treatments," said Deborah W. Brooks, co-founder of the Michael J. Fox Foundation for Parkinson's Research.
Partners in Parkinson's, a national strategic health initiative of the Michael J. Fox Foundation and AbbVie, aims to connect patients and caregivers with robust resources for managing their disease, with the goal of driving better outcomes for individual families and the PD community as a whole.
The survey found only 53% of patients feel "informed or very informed" about living with PD and 51% about how to understand if their disease is progressing. Only 48% of PD patients and 38% of caregivers reported feeling informed about where to turn for support or information, and even fewer (43% of patients and 36% of caregivers) felt informed of ways to connect with their local PD community.
As few as 28% of patients currently are seeing a movement disorder specialist, and 45% have ever seen this kind of doctor. This surprisingly low take-up of specialty care holds significant implications for patient knowledge and confidence about the basics of Parkinson's, including diagnosis and disease progression.
Only 66% of patients who see a general neurologist and 60% of those who see a primary care physician as their primary doctor for Parkinson's reported feeling informed about their disease, compared to 92% of Parkinson's patients who currently see a movement disorder specialist.
Patients who see a movement disorder specialist also are more likely to have a comprehensive dialogue about treating and managing their disease, including integrating holistic and non-medical approaches. For example, 78% of patients who see a movement disorder specialist reported discussing the role of exercise in managing PD and helping to alleviate some symptoms, including improving balance, motor coordination and mood.
The need for research volunteers is urgent—across all diseases, according to 2003 NIH data, 85% of clinical trials are delayed and 30% never even get off the ground due to a lack of volunteers. Patients treated by a movement disorder specialist reported feeling significantly more informed about opportunities to participate in clinical research.
The survey showed 81% of patients who see a movement disorder specialist said they would be "likely or very likely" to participate in a clinical research study if there were one being conducted in their area, compared with 49% of patients whose main doctor is a general neurologist and 33% of patients whose main doctor is a primary care physician.