Parkinson’s Foundation Presents Findings on Depression, Genetics and Palliative Care at Annual Neurology Meeting

More than 10,000 neurology professionals gathered to learn the latest in research and treatments at the American Academy of Neurology Annual Meeting in Boston, MA. This year, the Parkinson’s Foundation hosted a presentation and shared two posters in research and care. Notably, the Foundation’s PD GENEration: Mapping the Future of Parkinson’s study received special distinction and was selected as an oral presentation as part of the session on Movement Disorders Genetics and Risk.

1.  Screening and Treatment of Depression in Parkinson's Disease Within Movement Disorders Centers

It is estimated that 50% of people with Parkinson’s experience depression. Regularly screening for depression among people with PD can help identify untreated depression and prompt treatment. In this new study using data from our Parkinson’s Outcomes Project, we studied whether offering a systematic screening for depression (including the use of the Geriatric Depression Scale (GDS-15)), can help improve quality of life.

Study takeaways:

• Five Centers of Excellence began providing depression screening, diagnosis and treatment practices, and evaluated them through medical record reviews.
• During the implementation phase, when the formal screening rates where all done with a validated screening instrument (GDS-15) it was found that 68% of people with Parkinson’s reported symptoms of depression across the five sites.
• Prior to offering a systematic depression screening, screening rates for depression ranged anywhere from 56 to 92%, but only 14% used a validated screening instrument.
• Systematic screening for depression will help improve the standard of care and quality of life by educating clinicians and people with PD.

VIEW THE POSTER

Authors: James C. Beck, PhD, Janis Miyasaki, MD,FAAN, Connie C. Marras, MD, Nabila Dahodwala, MD,FAAN, Kelly A. Mills, MD, Meredith Spindler, MD,FAAN, Daniel Weintraub, Eugene Nelson, Sneha Mantri, MD, Amy Brown, MD, Anna Naito, PhD, Zachary Meyer, Allison Marie Allen, Marilyn Neault, PhD

2.  Frequency of Known Genetic Variants for Parkinson’s Disease in the PD GENEration Study Cohort

This presentation assessed the prevalence of genetic variants for PD through the Parkinson’s genetics study, PD GENEration. Widespread genetic testing will help inform previously unsuspected individuals with PD that they have a genetic mutation in one of the seven major genes known for PD, and ultimately qualify more people for enrollment in genetic-based PD clinical trials.

Study takeaways:

• PD GENEration genetic testing shows that among participants, ~13% have a genetic variant linked to Parkinson’s.
• Although reportable variants were more likely to be found in those with either young-onset PD high-risk ancestry or a positive family history, 8% of those without these features had a genetic variant for PD.

Authors: James Beck, Kamalini Ghosh Galvelis, Martha Nance, Anna Naito, Niccolo Mencacci, Ignacio Mata, Anne Hall, Jeanine Schulze, Rayza Priscila Hodges, Anne Marie Wills, Michael Schwarzschild, Karen Marder, Tanya Simuni, Mandy Miller, Jennifer Verbrugge, Lola Cook, Laura Heathers, Michelle Totten, Tatiana Foroud, Roy Alcalay

3. Outpatient Palliative Care for Parkinson’s Disease: Results from a National Survey

Palliative care, also known as supportive care, addresses physical, social, emotional and spiritual needs to improve the quality of life for a person with Parkinson’s and their family. Emerging evidence also shows that receiving palliative care improves patient and family-centered outcomes. However, little is known about the availability of resources and current practices among physicians in addressing palliative care needs in their clinics. The goal of this study is to describe the current availability of outpatient palliative care for people with Parkinson’s and their care partners at 33 US Parkinson’s Foundation Centers of Excellence.

Study takeaways:

• A survey was sent to 665 healthcare professionals across 33 Centers of Excellence in the U.S.
• Survey results show that among doctors:
  • 58% use a screening tool to assess non-movement symptoms
  • 6% report managing pain
  • 44% report managing depression and anxiety
  • 15% screen for grief, guilt and additional spiritual concerns
  • 4% report they discuss and review advance care planning documentation
• Many physicians are currently assessing and managing important palliative care needs for their patients with room for improvement in certain key components.
• Non-movement symptom screening is a more utilized palliative care component while referral to hospice when appropriate and discussing advanced care planning are reported less.

view the pOSTER

Authors: Kei Sugiura, MD; Umer Akbar, MD; Sandhya Seshadri, PhD, MA, MS; Megan Dini, MA; Peggy Auinger, MS; Sally A. Norton, PhD, RN; Jodi Summers Holtrop, PhD;  Benzi M. Kluger, MD, MS

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