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Abstract Details

Impact of Caring for Patients with Huntington’s Disease (HD) on Work Status
Movement Disorders
P6 - Poster Session 6 (12:00 PM-1:00 PM)
3-009
HD is a hereditary, progressive and fatal neurodegenerative disease that limits independence as it progresses. All people with HD eventually require caregiving; however, little is known about how caregiving affects a family member’s employment status.
To describe changes in the employment status of family members caring for a person with Huntington’s disease (HD) in US and Europe.
This is a retrospective analysis of data from the Adelphi HD Disease Specific Programme, a one-time survey in France, Germany, Italy, UK and US. Data were collected between July and October 2017. Three questionnaires were created for physicians, patients and caregivers. As few caregivers responded, we focus on the physician-reported impact of caregiving for HD on employment status.
Data were collected on 1,050 patients. Rates of caregiving were higher in France (69.4%) and Germany (64.9%), while the lowest rates were reported in US (39.6%). Overall, 555 (52.9%) patients received care from caregivers who were: professional only (n=68, 12.3%), both professional and non-professional (n=106, 19.1%) or non-professional only (n=378, 68.1%). Among non-professional caregivers, the most common family member to fulfil the role was the partner/spouse (74.3%). Overall, 27.4% of caregivers worked full-time, 22.7% worked part-time, 22.5% were retired and 20.1% were unemployed/homemakers. Differences were observed between countries: Germany (75.0%) and US (61.0%) reported the highest number of full- or part-time caregivers, whereas UK reported the lowest rate (15.2%). Physician-reported impact of HD on the caregiver’s work status was evaluated in 82.8% (n=460) of cases. Overall 45.7% (n=210) of caregivers reported a change in work status due to HD which typically occurred when patients were in Stage II or III of the Shoulson–Fahn scale.
This study has identified that HD patient caregivers, usually close relatives, experience a negative impact on employment status. The severity of impact depends on factors such as HD stage.
Authors/Disclosures
Alex Exuzides
PRESENTER
Alex Exuzides has nothing to disclose.
Karina Raimundo No disclosure on file
Ruoding Tan No disclosure on file
Tu My To Tu My To has received personal compensation for serving as an employee of Genentech. Tu My To has received stock or an ownership interest from Genentech.
Jonathan de Courcy Jonathan de Courcy has nothing to disclose.
Umang Ondhia No disclosure on file
Hugh Rickards 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.