Parkinson’s Foundation Shares Key Findings at 2020 International Congress of Parkinson’s Disease and Movement Disorders

The top minds, experts and organizations in the Parkinson’s disease (PD) field gather annually at the International Congress of Parkinson’s Disease and Movement Disorders. During the Congress, they share knowledge and collaborate on ideas to advance the quality of life for people with Parkinson’s. 

For the first-ever virtual Congress that took place from September 12 to 16, the Parkinson’s Foundation was invited to share nine posters with key findings in research, care and education, and was honored to present to Congress attendees as one of 16 posters accepted for the virtual Guided Poster Tour. Below are the posters shared at the 2020 Congress:

Weeding Through the Haze: A Survey on Cannabis Use Among People with Parkinson’s Disease

leafManaging PD symptoms is complex and many symptoms, especially non-motor symptoms, are not effectively addressed with current medications. In the U.S., cannabis has become more widely available for medical and recreational use, permitting those in the PD community to try an alternative means of symptom control. However, little is known about the attitudes towards and experiences with cannabis use among those living with PD or its perceived effects on PD symptoms. Click here to see poster.

We conducted an anonymous survey to 7,607 people with Parkinson’s disease and received 1,064 completed responses. Key findings include:

  • About a quarter of people with PD had used cannabis in the last 6 months.
  • Cannabis users were about three years younger than non-users (69 vs 72 years old).
  • Cannabis was primarily used to address PD (64%) vs. other diseases and was most often used to treat anxiety (46%), pain (44%) and sleep disorders (44%). 
  • Among cannabis users, 23% stopped using cannabis in the past six months, primarily due to a lack of symptom improvement. 
  • Among non-users (803 respondents), the primary reason against cannabis use was a lack of scientific evidence supporting efficacy (60%).
  • More information can be found in the pre-print manuscript of this study.

Authors: Megan Feeney, Benzi M. Kluger, A. Jon Stoessl, Danny Bega, Steven Gilbert, Andre Hosang, Elizabeth Ogren, Karlin Schroeder, Christiana Evers, Jim Beck

PD Conversations: Creation of an Online Parkinson’s Community

The Parkinson’s Foundation created and launched a new online community, PD Conversations, in January 2020. A survey was distributed to 1,937 registered PD Conversations community users at six months post-launch to assess satisfaction with and perceived value of the community for virtual support, which resulted in 211 completed surveys. Click here to see poster.

Key findings include:

  • Survey respondents were primarily people with Parkinson’s, followed by spouses/partners. Their ages ranged from 45-95 years old and slightly more females responded than males.
  • Respondents said their main reasons for visiting PD Conversations are to learn about others’ experiences, to connect and engage with peers, to ask questions about PD topics, and to know that they are not alone.
  • Almost two out of three respondents did not participate in another online PD community or in a PD support group. This data suggests that PD Conversations is meeting a need for connection and education from peers that is not found elsewhere.
  • Respondents who did not post or comment in PD Conversations visited the online community most frequently.
  • Most respondents found the content and resources provided in the community valuable and were satisfied with their overall experience.

Authors: Nicole Yarab, Dianett Ojeda, Jill McClure, Amanda Janicke, Veronica Todaro, Leilani Pearl, Cathy Whitlock, Adolfo Diaz

Measuring Unmet Need in Underserved Parkinson’s Populations

There is a significant gap in existing research and available information about underserved people with Parkinson’s including information about their treatment and care, access, unmet needs and self-reported outcomes. These populations include racial and ethnic minorities, women, residents of rural areas, individuals older than 70 and those not seeing Parkinson’s specialists.

The Parkinson’s Foundation is partnering with Allison Willis, MD, of the University of Pennsylvania Perelman School of Medicine and the PD and Movement Disorder Center, a Parkinson’s Foundation Center of Excellence, to carry out one of the largest paper-based surveys ever conducted of underserved PD populations from across the United States.

The goal is to gain a comprehensive understanding of all aspects of mental, social and emotional health of these underserved populations, combining previously tested tools with newly developed questions on access to care, support, and information and experiences since the start of the COVID-19 pandemic.

MDS 3The study findings will provide a deeper understanding and inform providers, institutions, organizations, and people with PD about critical care, hurdles to access and aid in the development of programs, resources and care practices that best serve these populations. Due to COVID-19 the study was delayed, however the Foundation is excited to release the results in fall 2020. Click here to see poster. 

Authors: Sheera Rosenfeld, Megan Feeney, Veronica Todaro, Allison Willis

Educating Spanish-speaking Communities About Parkinson’s Research Participation and Genetics: A Community Health Worker (Promotores) Model for Outreach

In this project, the Parkinson's Foundation, Muhammad Ali Parkinson Center, a Center of Excellence, and promotores organizations from the Southwest created a first-of-its-kind program ― a standardized Spanish-language training program about PD for 50 promotores. The study tracked how the information changed promotores perspectives on genetics and research in the PD community and assessed the quality of the training. Click here to see poster.

The project resulted in:

  • Increased agreement by promotores that genetic testing and research is important for Hispanic communities.
  • Participants felt confident sharing information about PD after the program and confirmed they received information that was useful, new and important.

Next, the promotores program plans to engage their communities at health fairs, consulates, health care professional training programs, farmers markets and more, to begin optimizing access to care and resources about PD with the long term goal of partnering with Hispanic populations on genetics research.

Authors: Karlin Schroeder, Sarah Osborne, Donna Sperlakis, Evalyn Mackenzie, Ignacio Mata, Claudia Martinez

Creating Competencies for Exercise Professionals Working with People with Parkinson’s Disease

exerciseOn March 5 and 6, the Parkinson’s Foundation hosted the Exercise Convening. Together, experts in exercise for people with Parkinson’s discussed recommendations for PD exercise guidelines, models of education for exercise professionals and delivery models that integrate community exercise with traditional interprofessional care for Parkinson’s. Click here to see poster.

Key findings include:

  • People with Parkinson’s should find ways to exercise regularly, targeting aerobic fitness, strengthening, flexibility, as well as balance, agility and dual tasking.
  • Exercise professionals may have more contact with people with Parkinson’s than the traditional interprofessional healthcare team, providing great opportunity for positive impact on quality of life.
  • Competencies for exercise professionals should be established based on the knowledge, skills and abilities considered to be essential entry-level performance. Knowledge includes exercise guidelines developed through rigorous research review on the frequency, intensity, time, type, volume and progression of exercise.

Authors: Miriam Rafferty, Lisa Hoffman

Parkinson’s Foundation Physical Therapy Faculty Program Evaluation

In 2016, the Parkinson’s Foundation partnered with clinical and research experts to implement a training program for physical therapy (PT) faculty who want to develop skills in teaching entry-level PT students about Parkinson’s. This poster describes the PT Faculty Program and its outcomes from 2016-2019. Click here to see poster.

Since 2016, the Parkinson’s Foundation has educated 44 PT Faculty who have in turn taught 5,580 PT students to date. The program has shown to improve curriculum content, teaching and treatment confidence and specialized PD knowledge related to PT Faculty. Key findings include:

  • Knowledge Improved: Participants significantly increased their knowledge from before to after the training.
  • Teaching and Treating Confidence: Participants had improved confidence teaching about PD and treating people with PD.
  • Benefits of PT Faculty Training: Themes related to benefits of PT Faculty Training in 2019 included impact related to improved curriculum content.

Authors: Miriam Rafferty, Lisa Hoffman, Laurie King, Terry Ellis, Fay Horak

The Future of Hospitalization for People with Parkinson's Disease

Parkinson’s Foundation assembled thought leaders in hospitalization and Parkinson’s to better understand hospital care needs for people with PD, models of success and best practices that can enable that care, and common barriers, drivers and strategies for adoption. This poster reviews the discussion of the Foundation’s Parkinson’s Hospitalization Convening held on December 6, 2019.

Estimated annual costs of hospital inpatient services for PD is $7.19 billion, 28.4% of the total direct medical cost of the disease. This cost is due in part to improper medication management for almost 75% of people with PD who are hospitalized, more than 50% of whom have complications that could be avoided. Despite significant impact on healthcare quality and cost, hospital care for people with PD varies widely and no nationally recognized standard of care exists. Click here to see poster. 

Some of the recommendations made by experts include:

  • Acute care hospitals utilize the Electronic Hospital Record to allow for the custom input of each Parkinson’s medication by Hooman Azmi, MD, FAANS from Hackensack University Medical Center.
  • Rehabilitations hospitals should establish PD-specific evaluations to be completed by a physical therapist, occupational therapist, and if indicated, speech language pathologist and nutritionist/dietitian by Christian Benedict, DPT from Kansas Rehabilitation Hospital.
  • Movement disorder centers working with their affiliated hospitals should offer hospital team education through the Parkinson’s Foundation Allied Team Training for Parkinson’s by Katherine Amodeo, MD & Amy Chesire, LCSW-R, MSG from University of Rochester.

Authors: Annie Wallis, Dianne Perret

Improving Hospital Outcomes through the Aware in Care Ambassador Program

awareincareData was collected through monthly reports submitted electronically by 81 Aware in Care Ambassadors from March 2019 through March 2020, pilot through post pilot phase of the program. The objective was to analyze the impact of the Ambassador Program in accomplishing three goals regarding hospitalization of people with Parkinson’s disease: educate the community, educate clinicians who treat Parkinson’s and educate hospital staff. Click here to see poster.

Key findings include:

  • Ambassadors reported hand-distributing 1,563 Aware in Care kits and 9,454 postcards.
  • Ambassadors reported educating 1,472 Clinicians, 6,300 members in the general population, 9,510 people with Parkinson’s, family and their caregivers, 1,179 professionals in senior aging/services, 157 hospital staff and 194 students ― a total of 18,812 people.
  • As a result of the Aware in Care Ambassador Program, kit distribution in addition to our reach has broadened significantly, improving overall awareness of Parkinson’s disease and the life-saving Aware in Care kit.

Authors: Annie Wallis, Dianne Perret

The Care Partner Perspective: Most Challenging Parkinson’s Symptoms

What are the most challenging symptoms faced by care partners when caring for a loved one with Parkinson’s? We asked and analyzed responses from 2020 Care Partner Summit | Cumbre Para Cuidadores registrants to find out. Click here to see poster.

Key findings include:

  • Top three care partners challenges include cognitive changes, gait/walking changes and postural instability/balance problems. When analyze by the gender of the care partner, the only common symptom in the top three is cognitive changes.
  • When we looked at the most challenging symptom by age of the care partner, the only group that did not select cognition most frequently were those in the 20-30 age range.
  • Cognitive changes seem to be a significant challenge for care partners regardless of length of diseases, age of care partner and gender of both the care partner and person with Parkinson’s with 51% of responses from spouses/care partners placing Cognitive Changes as one of the three most challenging symptoms.

Authors: Annie Wallis, MSW, Dianne Perret

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