Parkinson’s Foundation Presents 6 Findings at International Congress of Parkinson’s Disease and Movement Disorders®

Alongside the 10 million people around the world living with Parkinson’s disease (PD), there are neurologists, healthcare professionals, researchers and organizations who are dedicated to helping them. Every year, thousands of these professionals and researchers share their ideas to advance PD care and research at the International Congress of Parkinson’s Disease and Movement Disorders. This year the event was held in Copenhagen, Denmark in August 27 to 31. 

Discover the six research findings the Parkinson’s Foundation shared at this year’s event below. 

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1.  Informing People with Parkinson’s of Their Gene Variant Status: PD GENEration, a North American Observational and Registry Study

PD GENEration: Mapping the Future of Parkinson's Disease is a research study that offers genetic testing and counseling, in English and Spanish, to people with Parkinson’s. This study aims to simplify access to clinical genetic testing to people with Parkinson’s and will ultimately help accelerate clinical trials in PD.  

Key Takeaways

• The study has enrolled 10,510 participants from the U.S., Puerto Rico, Canada and the Dominican Republic.

• 12.7% of people with Parkinson’s who have completed PD GENEration testing have a genetic tie to Parkinson’s.

• By providing genetic testing to those from all backgrounds, the study helps inform care, diversify the data, help engage people in research and qualify more for enrollment in clinical trials for PD.

2.  Systematic Screening and Treatment of Depression in Parkinson’s within Movement Disorders Centers: A Quality Improvement Initiative

Depression is common in Parkinson’s disease and has a significant impact on quality of life.

A survey of clinicians at Parkinson’s Foundation Centers of Excellence revealed that most centers do not routinely screen for depression, and that the use of mental health professionals and antidepressants varies substantially, suggesting that clinical practice changes could improve care.

Key Takeaways:

• Administering depression screening through the Geriatric Depression Scale-15 (GDS-15) is possible among Parkinson’s Foundation Centers of Excellence.

• Time is a key barrier to administering formal depression screening.

• Significant changes in the depression scale were observed, suggesting improvements in depressive symptoms through systematic depression screening.

• This study demonstrates that depression screening among people with PD is feasible. By screening for depression, we can help detect, improve and treat depressive symptoms among people with PD.

3.  Understanding Parkinson’s Patients' and Carepartners' Palliative Care Knowledge & Preferences

People with Parkinson’s and care partners have significant palliative care needs; however, little is known about their preferences and knowledge of palliative care. As part of a national project to implement outpatient palliative care across Centers of Excellence, we sought to better understand patient and family perceptions and knowledge of palliative care through interviews conducted across 15 Centers of Excellence.

Key Takeaways:

People with Parkinson’s and care partners:

• Had varying levels of knowledge about palliative care. Some believed palliative care was about end-of-life, while others were unclear about the term and what it meant.

• Said non-movement symptoms are the most challenging aspect of Parkinson’s and wanted neurologists to routinely assess and provide ways to manage these symptoms.

• Felt that challenging emotions and spiritual needs were rarely addressed and want more support for these needs.

• Notice gaps in the delivery of palliative care and want more education and support to address their palliative care needs.

4.  An International Consensus Statement for Rehabilitation Care in Parkinson’s

Rehabilitation (including physical, occupational and speech therapy) plays a crucial role in improving PD symptoms and quality of life. However, rehabilitative care is under-recognized and under-utilized in PD and often only utilized in later disease stages, despite research showing its positive effects. Currently, there is a lack of consensus regarding rehabilitative services in PD. The Parkinson’s Foundation convened a task force to develop a consensus statement regarding the incorporation of multidisciplinary rehabilitation in PD care.

Key Takeaways:

• Rehabilitative interventions should be an essential component in the treatment of PD, from diagnosis to advanced disease.

• The consensus statement addresses fundamental components of rehabilitative care for PD and will help establish paradigms for the delivery of high-quality rehabilitative care for PD.

• Rehabilitative care should be offered regularly throughout the disease course with repeat assessments and interventions adapted to changes in a person’s condition or needs.

5.  Practice and Outcome Variation Across Parkinson’s Foundation Centers of Excellence

Parkinson’s Foundation Centers of Excellence are medical centers with a specialized team who are up to date on the latest PD medications, therapies and research to provide the best care. In this study, researchers examined the variation of care received from 12,664 participants with PD across 31 centers. To understand the relationship between practice and outcomes, next the researchers will identify treatment practices that are associated with better outcomes to help guide high quality clinical care.

Key Takeaways:

• While Centers of Excellence provide excellent care, there remains substantial variation in treatment practices and outcomes, which may relate to the PD patient population and remains to be further explored. 

• Center patients who received a PD diagnosis within 5 years:

  • Dopamine agonist use varied between 0 and 80% of patients.

  • 35% sent to physical therapy with 9 centers higher and 8 centers lower than average

  • 22% had falls with 8 centers higher and 6 centers lower than average.

• Center patients who received a PD diagnosis more than 5 years:

  • 40% sent to physical therapy with 8 centers higher and 10 centers lower than average. 

  • 20% received DBS with 12 centers higher and 8 centers lower than the center average.

  • 46% had falls with 7 centers higher and 8 centers lower than average.

6.  Parkinson’s Team Training Is Beneficial for New and Established PD Centers

Parkinson’s Foundation Team Training educates care teams on proven PD care practices and how to maximize teamwork. The goal of the Team Training is to provide more coordinated and complete care to improve the quality of life of those living with PD and their caregivers. Team training participants completed surveys before, immediately after and six months after training to assess learning and the benefit of the program in providing care.  

Key Takeaways:

• Team Training was shown to have a positive impact on interprofessional team members of both community care and established PD centers. 

• Attendees were more confident in the care they provide to those with PD and care partners, increased their knowledge of the roles of other team members, and better understood their own roles within the PD care teams, allowing teams to work more effectively together to provide better care.

• Better care translates to improving the quality of life for those living with PD.

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