Survey Reveals Knowledge Gaps Among Parkinson's Patients and Caregivers
NEW YORK, NY, September 9, 2014 - A recent survey of more than 1,500 Parkinson's disease (PD) patients, caregivers and physicians reveals that information and specialized care can help patients become more engaged in their own treatment and in the Parkinson's community.
"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 Parkinson's community as a whole.
The survey, conducted online by Harris Poll on behalf of The Michael J. Fox Foundation and AbbVie, found that only about half of patients feel "informed or very informed" about living with Parkinson's disease (53%) and how to understand if their disease is progressing (51%). Further, only 48 percent of Parkinson's patients and 38 percent 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 get connected with their local Parkinson's community.
Patients Who See Movement Disorder Specialists Feel More Informed about Their Disease
As few as 28 percent of Parkinson's patients are currently seeing a movement disorder specialist -- the type of doctor who specializes in treating Parkinson's disease -- and fewer than half (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 about two-thirds of patients who see a general neurologist (66%) or primary care physician (60%) as their primary doctor for Parkinson's reported feeling informed about their disease, compared to a substantial 92 percent 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, the majority of patients (78%) who see a movement disorder specialist reported discussing the role of exercise in managing Parkinson's and helping to alleviate some symptoms, including improving balance, motor coordination and mood.*
Unmet Need for Participation in Clinical Research
The need for research volunteers is urgent -- across all diseases, according to 2003 NIH data, 85 percent of clinical trials are delayed and 30 percent never even get off the ground due to a lack of volunteers. Patients who are treated by a movement disorder specialist reported feeling significantly more informed about opportunities to participate in clinical research.
The survey showed patients (81%) 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 percent of patients whose main doctor is a general neurologist and 33 percent of patients whose main doctor is a primary care physician.*
Partners in Parkinson's Aims to Fill in Knowledge Gaps
Partners in Parkinson's provides patients and caregivers with virtual and face-to-face opportunities to connect with knowledge and support. These include an educational website (www.partnersinparkinsons.org) featuring the first online tool to locate a movement disorder specialist, the chance to connect with AbbVie Parkinson's Disease Advocates who are available to provide one-on-one support anywhere in the United States, and comprehensive information about Parkinson's, including a downloadable Parkinson's disease guide.
Partners in Parkinson's is also touring the United States in 2014 and 2015, with full-day community events, offered free of charge, that put patients and doctors in the spotlight as they lead in-depth panel discussions on managing Parkinson's and living well with the disease. The events also showcase national presenting partners The Davis Phinney Foundation and The Parkinson's Action Network as well as local movement disorder clinics and Parkinson's support, advocacy and exercise groups.
For more information about Partners in Parkinson's and a full schedule of 2014 events, please visit www.partnersinparkinsons.org.
This survey was conducted online by Harris Poll on behalf of The Michael J. Fox Foundation and AbbVie from February 4 – March 3, 2014 among 1,530 U.S. adults aged 18+, among whom 528 are patients diagnosed with Parkinson's disease at age 30+, 500 are caregivers of patients with Parkinson's disease and 502 are physicians who currently treat at least 5 patients who have Parkinson's disease. In an effort to ensure that survey results would be indicative of the general Parkinson's population (among whom the average age of diagnosis is 60), the answers of 22 adults who self-reported diagnosis with Parkinson's prior to age 30 were discarded. Among the physicians, 202 are primary care physicians (PCPs) and 300 are neurologists. Among the neurologists, 119 identify themselves as movement disorder specialists and 181 are general neurologists (defined as neurologists who did not self-identify as a movement disorder specialist). For a complete methodology, including weighting variables, and a list of topline results, please visit www.partnersinparkinsons.org.
* Small base (n=70) and results should be interpreted as directional in nature.