Abstract Details

Title Barriers and Characteristics of Caregiving Preparedness in Parkinson’s disease: a qualitative approach

Topic Movement Disorders

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

Poster/Presentation
Number 10-023

Objective To identify unmet needs among caregivers of individuals with Parkinson’s disease.

Background Caregiving plays a central role in providing high quality, patient-centered care in the United States and is an integral component to the care that patients with Parkinson’s disease (PD) receive. In addition, there is mounting recognition of the need for providing caregiver-centered care as well. However, the value of caregiving in PD on a national level has not been described.

Design/Methods We conducted a cross-sectional survey of caregivers of subjects with PD enrolled at 15 Parkinson Foundation Centers of Excellence in the United States participating in the Parkinson’s Outcomes Project (POP). The caregiver preparedness scale in this survey included an open-ended question that asked, “Is there anything specific you would like to be better prepared for?” Responses to this item were recorded and grouped into thematic categories by four raters (2 movement disorder specialists and 2 trained research coordinators). One third of the responses were analyzed by two separate raters and any disagreements were adjudicated by a third rater.

Results A total of 221 unique responses from 177 participants were analyzed. The raters identified nine major themes among the answers provided by caregivers. Agreement between raters ranged between 70-89%. The themes identified, in order of frequency were: accessing services and additional education/training, managing specific symptoms, concerns about the future, emotional challenges, financial concerns, relationship changes, physical challenges for the caregiver, end of life considerations, and work-life balance.

Conclusions We identified several areas in which preparedness could be improved for caregivers of patients with PD. To address these identified unmet needs, targeted educational interventions and increased financial, physical and emotional support for caregivers are potential areas for future intervention.

Authors/Disclosures
Chinwe Nwadiogbu (University of Pennsylvania) PRESENTER	No disclosure on file
Marcela Pavon	No disclosure on file
Sarah Horn, MD (UT Health San Antonio)	Dr. Horn has received personal compensation in the range of $500-$4,999 for serving as a Consultant for AbbVie. The institution of Dr. Horn has received research support from Alzheimer's Association.
Nabila Dahodwala, MD, FAAN (Parkinson's disease and Movement Disorders Center)	Dr. Dahodwala has received personal compensation in the range of $0-$499 for serving as a Consultant for Genetech. Dr. Dahodwala has received personal compensation in the range of $500-$4,999 for serving as a Consultant for Mediflix. Dr. Dahodwala has received personal compensation in the range of $5,000-$9,999 for serving on a Scientific Advisory or Data Safety Monitoring board for Acadia. Dr. Dahodwala has received personal compensation in the range of $5,000-$9,999 for serving as an Expert Witness for Post and Schell. Dr. Dahodwala has received personal compensation in the range of $10,000-$49,999 for serving as an Expert Witness for O'Brien & Ryan, LLP. Dr. Dahodwala has received personal compensation in the range of $10,000-$49,999 for serving as an Expert Witness for MotleyRice. The institution of Dr. Dahodwala has received research support from AbbVie. The institution of Dr. Dahodwala has received research support from Medtronic.

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