Abstract Details

Title A Closer Look at the Unmet Needs, Research and Care Priorities for Women with Parkinson's

Topic Movement Disorders

Presentation(s) P5 - Poster Session 5 (5:30 PM-6:30 PM)

Poster/Presentation
Number 10-025

Objective Women and Parkinson's Teams to Advance Learning and Knowledge (Women and PD TALK) is establishing a national infrastructure to create the first patient-centered research agenda to help women and health care professionals be better informed about the unmet needs of women with Parkinson’s, as they relate to the development of research questions and healthcare decisions.

Background Parkinson’s disease (PD) affects an estimated seven to 10 million men and women worldwide. However, research indicates that women with PD experience differences in risk, reported symptoms, medication side effects, and access to care.

Design/Methods Ten regional forum sites were hosted across the United States to collect unmet needs and research priorities for women with Parkinson’s. Forum participants consisted of women with Parkinson's, care partners and health professionals. Through convenience sampling, regional team leaders recruited a range of 25 to 53 registered participants at each forum. Breakout sessions were facilitated at each forum using scripted questions. In total, 243 women with Parkinson's and 174 care partners and health professionals shared their insights. Breakout sessions were audio recorded and analyzed through thematic analysis.

Results Forum participants reported several observational differences between men’s and women’s experiences with PD. Participants (irrespective of gender or PD status) most frequently reported: the role of hormones on the development and severity of PD, decreased activities of daily living, embarrassment about the visibility of PD, treatment complications and cultural norms not prioritizing women with PD (each with a frequency ≥ 80%). Women with Parkinson’s were significantly more likely to discuss impact on identity (p<0.05) and personality (p<0.05), medication side effects (p<0.05) and poor communication with providers at diagnosis (p<0.05) than care partners and health professionals.

Conclusions The Women and PD TALK project will utilize these insights to create a research agenda to ensure better outcomes and improve the standard of care for women with Parkinson’s.

Authors/Disclosures
Megan Feeney, MPH (Parkinson'S Foundation) PRESENTER	Ms. Feeney has nothing to disclose.
Allison Wright Willis, MD (University of Pennsylvania)	Dr. Wright Willis has received personal compensation in the range of $0-$499 for serving as an Editor, Associate Editor, or Editorial Advisory Board Member for Pharmacoepidemiology and Drug Safety. Dr. Wright Willis has received personal compensation in the range of $0-$499 for serving as an Editor, Associate Editor, or Editorial Advisory Board Member for JAMA Neurology. The institution of Dr. Wright Willis has received research support from NIH. The institution of Dr. Wright Willis has received research support from NIA. The institution of Dr. Wright Willis has received research support from Biogen. The institution of Dr. Wright Willis has received research support from Parkinson Foundation. The institution of Dr. Wright Willis has received research support from Arcadia.
	No disclosure on file
	No disclosure on file
	No disclosure on file
Christiana Evers (Parkinson's Disease Foundation)	No disclosure on file

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