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Abstract Details

Patient and Physician Perspectives on the Care and Assistance Needs in Huntington’s Disease (HD)
Movement Disorders
P6 - Poster Session 6 (12:00 PM-1:00 PM)
3-003
HD is a hereditary, fatal neurodegenerative disease that limits independence as it progresses. Eventually, most patients require assistance with daily activities; however, little is known about the type of care they require, or differences in care requirements across countries.
To describe the assistance needs of people with HD across different countries.
This is a retrospective analysis of data from the Adelphi HD Disease Specific Programme – a cross-sectional survey conducted in France, Germany, Italy, UK and US (July–October 2017) including perspectives from physicians, patients and caregivers. We describe patient- and physician-reported care and assistance needs for individuals impacted by HD.
Data were available for 1,050 patients. Physicians reported that 555 (52.9%) patients had a caregiver. The most common physician-reported assistance type was managing finances (41.1%), followed by emotional support (39.8%), motivation to engage in daily activities (36.5%), planning and organising everyday activities (34.3%) and preparing meals (33.2%). For patients with a caregiver, assistance types were ranked similarly, although at higher rates (managing finances, 61.1%; emotional support, 56.76%; meal preparation, 54.6%; daily activities, 54.6%; planning, 53.3%). The most common needs varied across countries (France: shopping, 42.4%; Germany: daily activities, 62.4%; Italy: meal preparation, 40.9%; UK: finance management, 42.6%; US: emotional support, 37.6%). Neurologist-perceived disease severity distribution was similar in Italy, UK and US. Germany had the highest number of mild patients and France the highest number of severe patients. Of 52 patients who responded with caregiving needs, 40 (76.9%) reported needing assistance and 26 (65.0%) reported receiving assistance.
Assistance needs of people with HD vary with disease severity, cultural differences, family support and other factors. These results show that a high proportion of individuals are not receiving the assistance they require. A multidisciplinary group can help patients with HD and their families to access appropriate care based on individual needs.
Authors/Disclosures
Alex Exuzides
PRESENTER
Alex Exuzides has nothing to disclose.
No disclosure on file
No disclosure on file
No disclosure on file
Jonathan de Courcy No disclosure on file
No disclosure on file
No disclosure on file
Martha A. Nance, MD (Park Nicollet Clinic) Dr. Nance has received personal compensation in the range of $5,000-$9,999 for serving as a Consultant for Voyager. Dr. Nance has received personal compensation in the range of $500-$4,999 for serving as a Consultant for ROche. Dr. Nance has received personal compensation in the range of $5,000-$9,999 for serving on a Scientific Advisory or Data Safety Monitoring board for Roche. Dr. Nance has received personal compensation in the range of $500-$4,999 for serving on a Scientific Advisory or Data Safety Monitoring board for Uniqure. An immediate family member of Dr. Nance has received stock or an ownership interest from Fresca. The institution of Dr. Nance has received research support from HDSA. The institution of Dr. Nance has received research support from Parkinson Foundation. Dr. Nance has received research support from Parkinson Foundation. The institution of Dr. Nance has received research support from Neuraly. Dr. Nance has received personal compensation in the range of $500-$4,999 for serving as a speaker with AAN.